Yes, I suck at it, and yet I can’t throw my hands in the air and give up.  I am compelled to fundraise because of how breathtakingly close we are to clinical trials for drugs to treat fibrodysplasia ossificans progressiva (FOP).

Our dear Miranda, our reason for FOP fundraising

I blogged last weekend about the Canadian FOP Network’s conference the week before.  At that conference, we heard from the amazing scientists at the University of Pennsylvania about the pace of research for effective treatments.  In a nutshell – things have progressed to the point where the experts are actively PLANNING how to bring certain drugs to clinical trials!  In fact, a substance called Palovarotene has been licensed by a Canadian (yes, Canadian) drug company, Clementia Pharmaceuticals, in collaboration with the UPenn FOP research centre; if all continues to go well, this drug will be ready for clinical trials in a handful of years.  Another substance, Dorsomorphin, is being developed by scientists at Harvard and Vanderbilt Universities to also hopefully begin trials in the near future.

Things are looking so good, and it’s been so fast…  When my daughter Miranda was first diagnosed with FOP in 2007, the genetic mutation which causes the disorder had just been discovered the year before.  There was lots of hope and optimism, but really nothing concrete.  Here we are just 6 years later, with at least 2 specific potential medicines in advanced stages of pre-clinical studies.  And the word is, further, that if those don’t pan our for some reason, there are even several other drug candidates which have been identified for investigation.  Eeeep!!!  It’s all so good.  I feel like hyperventilating.  Of course, drug testing doesn’t mean a guarantee of effective treatment…  But if you follow hockey, you may be familiar with the statement, “You miss 100% of the shots you don’t take.”  Those researchers are trying hard, and if we want a chance at an FOP medicine, we have just got to support them.

Which comes to me…  Earlier this year, I was buoyed up with enthusiasm.  I saw phenomenal fundraising efforts by the Gordon, Otto and Wheelock/Gambaiana families in the USA, the FOP Action group in the UK and of course the Herce and Connell families in Canada with their Ride to Cure FOP event, and I was raring to go.  My family and I have done fundraising efforts in the past, it’s true; for the past 2 years we also did the Ride to Cure FOP (funds benefiting the Canadian FOP Network, which in turn supports the UPenn FOP research team).  But, in the past my family’s and my efforts were fairly modest and small scale – we raised funds from family, friends and well-wishers, and we picked a day to ride bikes and/or walk to show our devotion to the cause, along with as many of those family/friends/etc as we could interest in accompanying us.  This, year, I thought, why don’t I ramp this up!  I could hold a Ride and Walk to Cure FOP event, but this year I could encourage our supporters to set up their own fundraising pages!  I could get corporate sponsorships and food donations (for the picnic afterward), and make it a big deal like the Herces and Connells have done!  I was going to do this in the summer, when we always do our one major fundraiser for the year.  Wow, it sounded so great…

And then, guess what, I didn’t get organized in time.  D’oh!!  If I was going to do all this during the summer, which is also when the other Canadian groups have done their events, I should have gotten my act together early in the spring and started moving on the plans.  But, we ended up doing a Make-A-Wish trip to Florida in March, and in April, I had to do a 2 week trial (I am a lawyer), and then in May, Miranda and I travelled to the Canadian FOP Network conference in London, Ontario.  In the midst of all that stuff, I simply dropped the ball.  And that, my friends, illustrates the manner in which I suck at fundraising (NOTE – my husband Pete sucks as bad as I do – and he freely admits it).

But, all is not lost…  There’s still time to do a fundraiser this summer.  In short, we’re going to do the same thing we did last year.  And so:  This is the official announcement – we’re going to do a “Ride and Walk to Cure FOP” on Sunday, July 28, 2013 at Calgary’s Baker Park!  In an effort to do something a little different, though, this year we’re going to do a parents vs. kids fundraiser – Pete and I have our own Giving Page and Owen and Miranda have theirs.  Let’s see who can raise the most money!   Please please please support the parents or the kids with a donation…  Go to www.canadahelps.org, select “Giving Pages” and type in either “Karen and Pete” or “Owen and Miranda”.  And, if you’re in Calgary on July 28, come join us for a fun day of bike riding or walking at Baker Park, with a picnic to follow.  More details coming soon…

Some of the Ride to Cure FOP 2012 Calgary folks!

It’s over…  WAAAHHH!!  Gulp.  Sniff.  I’m sad that it’s finished and I’m not there anymore.

“It” was the Canadian FOP Network’s conference last weekend.  It was so great, and felt so dang short.  It was only a day and a half long, and it went by in the blink of an eye.   But on the other hand, I have lots of great memories from it, so I guess I milked everything I could from it. 

So here’s how it all went…  A week ago Thursday, my daughter Miranda and I got up bright and early in the morning and took a cab to the airport (dad Pete and brother Owen wanted to come too, but logistics prevented).  We flew to Calgary, and then got off the plane there to wait for our connecting flight.  We were also waiting there for my dad, Malcolm, and mom, Helen, who were joining us on that leg of the journey.  As we were waiting, we spied someone else I knew, but had never met – Kathleen Degenhardt of Goodsoil, Saskatchewan, accompanied by her mom, Karen, and sister, Natalie.  Kathleen is a young woman who, like Miranda, has Fibrodysplasia Ossificans Progressiva.  I had no idea that Kathleen and her family were going to be on our flight, so that was a sweet surprise!

After a longish flight to London, Ontario, we picked up a rental car and drove to the Best Western Lamplighter Inn, where conference-goers were able to get a special hotel rate.  The next day, everything got started…

The conference began with several hours of medical clinics at the Thames Valley Children’s Centre (“TVCC”), a children’s medical rehab facility which hosted our conference.  Everyone with FOP had the opportunity to be examined (if they so chose) by a local Canadian dentist with experience treating FOP patients and by Drs. Kaplan and Pignolo of the University of Pennsylvania’s “Centre for Research into FOP and Related Disorders” (aka the UPenn FOP lab).  I didn’t have high expectations for the dentist – naively figured he wouldn’t be able to tell me anything I didn’t know.  Guess what, WRONG.  Dr. Friedman was able to give me a bunch of useful info; I was impressed (and he was a super nice guy too – big kudos to him for volunteering his time).  As for the appointment with Drs. K and P (joined by anaesthesiologist Dr. Zvi Grunwald, another knowledgeable expert) – I don’t even know what to say.  I’m so in awe of these doctors, who have devoted their professional careers to learning about FOP and how to treat it.  It’s an amazing feeling to be there with doctors who know way, WAY more than I do about my kid’s rare disorder.  Anyway, luckily Miss M hasn’t had any new FOP flare-up activity for a while, so they spent much of their time checking out Miranda’s range of motion.  They also told me about a new anti-inflammatory medicine to try which has apparently been useful for some FOP patients; I plan to get my girl a prescription for it.  Also that day, Miranda spent some fun time hanging out with Brooke Connell, who is 12 years old and has FOP.  Brooke was really great with Miranda, and took her on a walking tour of the TVCC while I was busy with some conference related stuff (Brooke’s mom, Carrie Connell, works at the TVCC, which is how we got the facility).

Dr. Grunwalld, me, Miranda, Dr. Pignolo and Dr. Kaplan (getting a scalp massage from Miranda, LOL).

Brooke and Miranda, posing by their "All About Me" displays.

That day, we also met up with some of the kids diagnosed with FOP since the time of our 2009 conference.  The first was Clara Bouchard from Montreal, Quebec.  Clara is just a few months younger than Miranda, and though Clara speaks French and no English and Miranda speaks English and no French, the girls communicated just fine through the language of Nintendo Wii at the TVCC, ha ha.  We also met Jaxon Hamilton, a super cute and funny 4 year old with a big grin, and James Dizon, a 9 year old whose mom is my co-board member, Debbie Dizon.

The two little FOP ladies, Clara and Miranda, with Clara's brother Isaac.

Jaxon and Miranda

Later on, after a nice swim break at the hotel pool, we had a “meet and greet” reception at the hotel.  This was just for fun, a nice chance to meet all the conference attendees and get to know each other.  Miranda rapidly tired and had to leave early with my mom – too much excitement and too little sleep in the previous 24 hours – but I hung around for a while and had a great time.

The next day was really the main event.  This was when we got to hear the FOP researchers talk about the latest news, while the kids played in other rooms under the supervision of some terrific volunteers.  That day, Saturday, we heard presentations by Dr. Eileen Shore, research director at the FOP Lab, and by Drs. Kaplan, Pignolo, Grunwald and Friedman.  This was great stuff.  The high points:

- The world of FOP research is a “vastly different place” in 2013 as compared to how it was in 2009 at the time of our last conference (this from Dr. Fred Kaplan).

- The recent survey of FOP flare-ups conducted by the UPenn Lab with the close collaboration of the International FOP Association (“IFOPA”) resulted in, if I remember correctly, an over 70% response rate.  This is phenomenally good, and will give the FOP Lab “natural disease history” information which will be vital to determining the success of potential FOP treatments.

- There are 13 (I think this was the number) different research facilities in the world doing work relevant to FOP.  13!!  This is truly astonishing to me, but there you have it.

- There are 2 very promising drug candidates for testing on FOP patients within the next few years.

- The first potential drug is called Dorsomorphin; this substance and/or its derivatives block the FOP gene from operating.  This one is being developed by a group of researchers at Harvard University with consultation by the UPenn scientists.

- The second item is called Palovarotene, and it disrupts cartilage formation and reverts flaring tissues to a dormant state.  The UPenn group is especially hopeful about Plovarotene, as it has already gone through “phase 1” safety tests for a lung disease(and was shelved for that disorder as being not as useful as desired).  Given that Palovarotene has been through this first level of testing, this will somewhat accelerate the ability to progress with testing.

- Palovarotene has now been licenced for potential FOP use by, get this, Clementia Pharmaceuticals, a drug company located in Montreal, Canada!!  Big, important Canadian connection here.  J  In fact, the CEO of Clementia, Dr. Clarissa Desjardins, attended our conference.

- The IFOPA is working on a project to set up a registry for FOP patients to enter (anonymously) details about themselves and their FOP progression.  This info will be very helpful to FOP researchers.

It was fantastic to hear about all of this…  Truly music to my ears.  The future is looking very brightmfor potential FOP medicines.

In addition to the research presentations, we also had a panel discussion involving 2 young adults with FOP, Marin Wallace and Ian Brodie, plus the mother of a young adult with FOP, Amanda Cali, mother of Ian Cali, and yours truly, presenting as the mother of a young child with FOP.  Each of us spoke for a while about the subject of “ways to lead a rich and full life with FOP”.  This was very interesting, and provoked lots of dialogue with our audience.

One sad note…  We learned on June 1, our main conference day, that our youngest known Canadian with FOP had died that very day.  Eliane Bissonnette had had an unusual presentation of FOP, or possibly FOP plus unrelated health concerns, but either way, she passed away from complications following surgery a few days prior.  She was just 2 years old.  My heart aches for Eliane’s family.  I am also very sad that we never had the chance to know this little sweetheart.

In any event, fast forward to the evening of our conference, when we had a delicious buffet dinner at the hotel.  After the dinner, we gathered in the hotel atrium for a bunch of photos – 2 thumbs up to all the FOP kids and adults in attendance, who were very patient and gracious as they had to pose again and again.

The kids and adults at our conference who have FOP (minus two).

And then, it was over.  We flew home the next day, and went back to our regular lives.

You know what the best part was?  Yes, it was terrific and so encouraging to hear about the FOP research underway.  But that wasn’t the highlight.  The most fantastic thing about the conference was being with other people who share a unique experience in living with FOP.   There’s no explaining to do; everybody just GETS IT.  This is a priceless thing.

As a final note, big shout of thanks to Carrie Connell, the CFOPN president, who did by far the lion’s share of the work organizing our conference.  It was a great success.

OK, of course everything’s relative.  Obviously I don’t mean that anyone is lucky, period, to have Fibrodysplasia Ossificans Progressiva.  That bit is pretty much the opposite.  What I mean is that in comparison to the situation for many, many other rare diseases, people with FOP are lucky.

Here’s what I mean…  One of the biggest problems faced by people with most rare disease is that there are no cures, no treatments, and not even any research going on.  If you’re a scientist and you could research, say, cancer, which afflicts millions of people, or a rare disorder that has a few hundred or thousand sufferers, which way are you going to go?  So, in many cases, symptomatic treatment for rare disease is as far as it goes.  A little while ago, I met a woman with a disorder which is 10 times more common than FOP, though it still counts as rare, and she told me that to her knowledge (and she’s looked into the matter), there’s almost nobody in the world researching her condition and not even any organized non-profit group for those with the disorder.  FOP, on the other hand, isn’t like that at all.

Amazingly for a condition which is confirmed to affect only 800 people (though about 3500 are suspected worldwide),  there are well-establishes laboratories (yes, that’s plural) working hard to find treatments for FOP, and they have made incredible progress.  There are actually two science facilities in the world (Philadelphia, USA and Oxford, England) completely devoted to researching FOP, and a surprising number of other labs at universities which also do related work.  Researchers have uncovered the genetic basis of FOP and are currently engaged in pre-clinical studies of at least 2 or 3 different compounds with promise for treating FOP.  The future looks pretty rosy for a medicine for FOP within the next 10 years.  Additionally, there are a number of established not-for-profit organizations in the world which raise money for FOP research and which provide opportunities for people with FOP to connect, get to know each other and share information.

Why is the situation so different for FOP?  One important factor is Ms. Jeannie Peeper of Florida, USA.  Jeannie is an adult woman with FOP, and over 25 years ago, she developed an itch to get to know others with FOP (there were no FOP groups at the time).  Jeannie got the ball rolling, and before long, she had founded the International FOP Association.  Today, the IFOPA is a well-established charity which provides hundreds of thousands of dollars each year for FOP research.  But for Jeannie, FOP might be much like so many other rare disorders, with nothing happening.

Just this week, the Atlantic magazine published what I think is a very well-written and fascinating article about Jeannie, the IFOPA and research into FOP.  The article also talks in general about the difficulties in getting research going for rare disorders.  It’s an interesting read, and you can check it out here:  http://www.theatlantic.com/magazine/archive/2013/06/the-mystery-of-the-second-skeleton/309305/

Because of my daughter Miranda’s FOP, I will forever be grateful to Jeannie and to the scientists who study FOP.

I mentioned above that there are now a number of FOP organizations world-wide.  One of them is here in Canada, where I live.  Our group is called the Canadian FOP Network.  Unsurprisingly, the IFOPA provided our founder, Carrie Connell (mother of a girl with FOP) with the ability to make contact with other Canadian families (thanks again, Jeannie Peeper), and a few years ago our group got charity status.  As it happens, next weekend we’ll be running a conference about FOP in London, Ontario.  I can’t wait!  Events like this create great opportunities for FOP families to meet each other, which is something we can usually only do over the internet.  In addition to the fun of socializing, we’ll also get to hear presentations about the latest research by important scientists from the FOP lab at the University of Pennsylvania, which is the biggest FOP facility in the world.  Yay yay yay!

While the focus of our conference is Canadians with FOP and their families and caregivers, we also welcome people from outside Canada.  It’s not too late to register, so if you’re interested, go to:

http://canadianfopconference.eventbrite.ca/#

And, because no blog is complete without a photo, here’s one of me, Miranda and Dr. Fred Kaplan of UPenn at our last Canadian conference in 2009 (Miranda was 4 years old).  Miranda’s cheeks are bulging because she had just stuffed in some chocolates which Dr. Kaplan had given her (LOL).

My daughter Miranda is 8 years old right now, and starting to become – *GASP* – a pre-teen (where does the time go? etc).  In particular, she’s becoming quite interested in fashion.  Gone are the days when I could simply pick her clothes and she’d wear whatever I chose.  Now she wants to be an active participant not only in selecting an outfit for a given day, but also in buying the clothes in the first place.

I feel like we’re starting a new phase in Miranda’s life.  As with all the other stages she’s gone through, I’m finding this fascinating.  Of course, every parent feels that way, but when your kid has special needs, I think there’s an extra … poignancy
to the experience.  In our case, when we found out 6 years ago that Miranda has Fibrodysplasia Ossificans Progressiva, I imagined (in my admittedly pain-soaked and distorted-from-reality haze) that my girl would never be like other kids, and that her life would be marked by absolutely nothing but DIFFERENCE from all other kids.  I mean, come on, a disorder which causes your muscles to turn to bone, and locks your joints?  How could a kid like that ever have normal, everyday concerns?  Yeah, that was wrong.  Totally wrong.  My daughter is just like every other girl in her grade two class.  Sure, she has FOP,
but to her that’s just like saying she has 2 cats or a tree in her backyard – ie, not terribly interesting.

And so, in the spirit of fun, and in recognition of my girl being almost a pre-teenager, I give you the Miranda fashion show…

Here we have Miranda in her schoolyard on the way to school.  Miranda particularly likes this long, pink T-shirt because she can wear it with footless tights, which are all the rage among the 8 year old set (though admittedly here she’s wearing it with
yoga pants).  As for the helmet, well, there’s the nod to FOP…  She wears that while walking on hard surfaces to protect her head in case of a fall, and in this pic, we just stepped off the sidewalk for a moment to snap a photo.  Anyway, Miranda had a hand in picking the helmet too – she likes the yellow background with pretty flowers, and she likes the fact that as it’s technically a skateboarding / cycling helmet, it has kind of  “cool” vibe.

Next up, the Brownie ensemble.  Miranda is in her third year of Girl Guides, which she loves.  This year, Girl Guides of Canada adopted a new uniform, which consists of what you see in this picture.  At most Brownie meetings Miranda doesn’t wear the sash, which has a tendency to slip off her shoulders because those joints are fused in place and she can’t just raise her arm to
slide the sash back on.  Usually, she just wears the T-shirt (and pants) with the scarf, and she loves the tee because it’s got a cute little “cheater” layered look to it – you can see the brown edging on her sleeves and the bottom of the shirt, but in this pic you can’t see the bit of brown fabric at the V neck which makes it look like she’s wearing a brown tee underneath.

This photo shows Miranda wearing her prized jeggings (and her mom’s crocs, which is just for pure silliness, LOL).  She would wear these suckers every day if she could.  Seriously her faves…  As for the shirt, she pulled it out of the summer clothing drawer in her dresser for the first time this season, and was immediately entranced by the little bows with beads attached which sit on the shoulders.

Finally, here’s Miranda wearing a dress we found while rummaging around a thrift store.  Seriously, almost brand new, and just gorgeous!  Miranda was truly delighted when we found this little number, which has a black net petticoat style liner and black velvet swirly patterns.  Extra good, and in fact essential, is the fact that the dress fastens with buttons up the back,
so Miranda can step into the dress and we can slide it up over her arms and shoulders (necessary due to the aforementioned shoulder fusions caused by FOP).

A final word – in addition to being interested in clothes, Miranda is a good student at school and likes softball and swimming.  She IS a well-rounded kid. 

It’s Mother’s Day!  And for once, this blog post is about ME.  Me and, you know, FOP…

I woke up today to a very excited Miranda, jumping up and down to show me the special card she’d made me in school and give me my gift.  Owen, at age 11, tried to be less worked up, but also wanted to show me what he had made.  There was no breakfast in bed as Miranda hadpromised (frankly I wasn’t holding my breath on that one), but it was a sweet moment.

It’s precious to be a mom and experience these things with your kids.  Unbelievably special.  And, on Mother’s Day, it’s great to reflect on how lucky I am.  I have two great children, both of whom are bright, friendly, lovable, smart and so much fun.

I have also, however, lived through things as a mother that no parent should ever, EVER have to deal with.  Thanks to my daughter Miranda’s Fibrodysplasia Ossificans Progressiva, I have had some truly horrible, heart-wrenching moments.

The worst day of my life was April 19, 2007 when my beautiful, happy two year old was diagnosed with FOP.  After ten months of uncertainty, worry and stress (all of which began with a huge bump on my daughter’s forehead), I learned from a medical geneticist that my daughter had a genetic disorder which he described as “worse than cancer”.  On that day, I learned that my child would have progressive episodes of painful soft tissue swellings in which muscles, ligaments and tendons were being destroyed and replaced by bone.  Miranda would gradually lose her ability to move her joints, robbing her of mobility and independence and leading to an earlier-than-normal death.

My sister Susie, her daughter Ella and me with Owen and Miranda *just* before Miranda's diagnosis.

On that day, and the 2 or 3 days which followed, I felt true blackness in my soul.  I honestly can’t think of any better way to describe that time.  It was as if the world had shattered, all of time and space had come to an end, and there was nothing but terror and pain left.  That was an unbelievably horrible place to be.

Of course, that didn’t go on forever…  My husband and I did, after all, have a 5 year old and a 2 year old who continued to have needs, and didn’t know or care about FOP.  I crawled, hanging on by my fingernails and the skin of my teeth, up out of that pit, and had to figure out how to live this new life.  Because, of course, that’s what mothers do.

After some more time had passed, I learned how to cope and pulled myself together.  I figured out how to mother a child with FOP – including watching my unsteady toddler like a hawk (I was the UBER helicopter parent), having ice packs at the ready and using them frequently, and becoming educated on how and when to use Prednisone.  I got it sorted out the best I could.  However, I still had plenty of difficult things ahead…

There was the time when Miranda’s back swelled up so big that it looked like she was carrying a kitten curled up under her T-shirt (and then the next two or three times that happened again).  There was the moment I realized Miranda could no longer move her arms above chest level – a couple of months after diagnosis – and the moment I realized her left shoulder was locked so tightly she couldn’t move it at all.  There was the nauseating day when I found a hard lump in Miranda’s left bicep, and I knew she’d lose movement in her left elbow.  There was the timewhen, about ten months after the left elbow became limited, Miranda’s right arm froze up and left her right elbow became locked in an L shape.  So many terrible occasions, and all before my daughter was even four years old.  Since then, I’ve worried over my daughter’s worsening scoliosis (caused by FOP and untreatable for that reason), and fretted about helping my girl maintain as much independence as possible.  I’ve stressed that I should do more fundraising to for FOP research into the much-desired cure.  I’ve feared that I wasn’t spending as much time with my son, who doesn’t have FOP, as I should be doing.

But – there were some good things too that came with the FOP diagnosis.  After five months off work, I was able to return to my career, which I loved, and with a great new schedule working only school hours, and from home.  I got to know some truly wonderful people in the FOP community, folks Icould look up to and learn from.  Locally, I made some great friends among the moms and dads in the Vancouver rare disease community.  On a more basic level, I learned to live in the moment and appreciate the good things in life, something I had never thought much about before.

Enjoying a day on the beach with my kiddos

This FOP thing has been a wild ride, one which has kind of “piggy-backed” on top of the regular parenting experience.  I am a mom, like any other, but different, too.  I am an FOP mom.

Two very different events to talk about this week: pulmonary functioning testing and the annual Rare Disease Foundation fundraiser, “Rare Finds”…

The lung stuff was earlier in the week; Tuesday, to be exact.  Back in 2007 when my daughter Miranda was first diagnosed with Fibrodysplasia Ossificans Progressiva, it was recommended that when M had been symptomatic for about 5 years, we should have her lung capacity tested.  Rotten old stinky old FOP can cause bone formation in and around the ribs, both front and back, limiting the ability to expand the rib cage.  In extreme cases, it might eventually be necessary to have supplemental oxygen administered, but that isn’t typically the concern just 5 years after diagnosis.  Rather, the idea is to get a baseline reading of pulmonary functioning when the person is healthy so that if the person later becomes seriously sick or hurt, doctors will be able to compare lung status at that point to the baseline and get an idea of how major the problem is.  We should have had Miranda tested in 2012, so we’re a bit late, but a year delay is no biggie.

On Tuesday of this past week, I took Miranda to the Respiratory Clinic at BC Children’s Hospital for the testing.  A therapist administered a bunch of exercises to M – interestingly, they required that this be done WITHOUT the presence of the parent at hand (not sure why this is, but whatever).  Then, we waited for a bit, and were finally seen by a medical student who’s learning the ropes, and then by the physician in charge of the clinic.

The student we saw naturally had never heard of FOP, so I took the opportunity to tell her all about it.  I showed her Miranda’s toes, and explained the importance of recognizing the FOP toe particularity.  Given that there are (to my knowledge) only 2 people in BC with FOP, this definitely an unusual day for this student.

The pulmonary expert had actually seen the other child in BC who has FOP, and was at least somewhat knowledgeable about some of the issues (wow, such a strange experience for us, LOL).  He told us the results of Miranda’s testing.  Yup, her chest is more restricted than would be the case for the average kid, and he said she mostly breathes from her diaphragm.  However, he then quickly went on to tell me there’s no need to worry, since breathing only gets to be a real concern when lung functioning is down to 25 to 30 percent, and Miranda is well above that.  He also said he wants to see M at least once per year, and he  impressed on me the need to bring Miranda to see him right away if she gets a chest cold and is having difficulty coughing up phlegm (duly noted).  Anyway, pulmonary functioning testing is now doney-done-done and checked off the list.

Lung functioning didn't seem to be an issue for Miranda in March on her "Make-A-Wish" trip to Florida (here, climbing all over the playground at "Give Kids the World" village).

Now the fun part…  Last night was the annual Rare Disease Foundation fundraiser, “Rare Finds”.  It’s a gala event involving a silent auction with many cool and fabulous items, cocktails, food and glamour.  This is the third year in a row that my husband Pete and I have gone to the event, and last night, it was held in the beautiful architectural marvel which is the new centre at Van Dusen Gardens.  TOTALLY glittering and amazing event!

The food was amazing, and fun.  Top chefs from high end Vancouver restaurants each had a sort of kiosk, with all the kiosks arranged in a big circle – I think there were about 10 of them.  At each kiosk, the chef set out rows and rows of bite sized gourmet delicacies, and the idea was to try every one of the delicacies and then vote for your favourite by depositing one (or more) of three shiny pebbles given out at the entry into a bowl on the individual chef’s table.  At the end, the chef with the most pebbles had the honour of being the most popular chef of the evening (I’m not sure who won, but two of my three votes went to dessert places!).  This food was SO unbelievably good – Pete and I each ate way, way more than was probably good for us. 

On a more serious note, there were also a couple of presentations as part of the event.  One was by a fellow rare disease parent and friend of mine, Chad Farquharson, who spoke and showed a Power Point slide show about his son Grayson, who has the rare disorder “Maple Syrup Urine Disease”.  Grayson is a gorgeous little boy who has had to have hundreds of blood tests in his short life, and who must eat only a precisely balanced diet each day in order to avoid brain damage from protein, which he can’t fully digest.  Chad spoke incredibly movingly and eloquently about Grayson and about the need for research into the care for kids with rare disorders.  There wasn’t a dry eye in the house when Chad spoke, as particularly evidenced by the next speaker, medical genetecist and RDF founder (not to mention also Miranda’s physician) Dr. Milan Patel, who was noticeably choked up when he started his talk immediately following Chad…  The good Dr. P then spoke impressively himself, talking about the RDF model of giving “micro-grants” to medical care-givers who want to research an aspect of actual, hands-on care of kids with rare disorders.  I think the Rare Disease Foundation probably raised a bucket full of well-deserved cash last night.

It was also super great to hang out with my other RDF parent peeps – Chad and his husband Wayne, plus Lori, Ani and Isabel and their husbands.  Nope, none of these people have kids with FOP, but each one of their little ones has some other rare disorder, and these are people whose friendship I have come to greatly treasure and value.  And we all cleaned up great. 

Did Pete and I look awesome, or what??

I’m ba-aaack…  Time-intensive work project now finished, and I’m ready to blog. 

My topic this week is – TEAM SPORTS!  More specifically, the one that involves running around the bases.  Right in the middle of my just-now finished big work thing, softball started up again.  Miranda played the last couple of seasons, and was super excited for it to get going this year.  It’s been underway for a couple of weeks now.

Look at that excitement!

When I was a kid, I hated team sports…  But my daughter is not like me.  She actually WANTS to be on a sports team (go figure).  My husband and I looked at the situation carefully when she was in kindergarten, and we decided that softball was really the only option for Miranda.  Hockey is on skates and involves too much falling on ice, soccer has too much running and jumping/twisting about and basketball and volleyball require overhead reaching.  Yes, I’m aware that there have been other kids with Fibrodysplasia Ossificans Progressiva who’ve played these other sports, but for Miranda, with her specific physical limitations, softball seemed like the best fit.

When Miranda plays softball, she has to adapt things a bit.   As her arms are locked down by her sides, she obviously isn’t doing any overhead throwing.  Throwing at all isn’t really her strong suit, but she can do it to some degree.  Likewise catching – she can catch balls that end up below waist level (which is most balls, keeping in mind that these are 7 and 8 year old kids, LOL).  Batting is interesting too…  Miranda’s right arm is locked in an L shape, so she’s kind of restricted in terms of how she holds the bat, and she doesn’t do a big, powerful swing – but she DOES manage to hit the ball, sometimes.

As for running the bases…  When M started playing a couple of years ago, my heart was in my throat whenever she would run.  Maybe because of the extra FOP bone in her body, she had a curious habit of leaning precipitously forward whenever she would run.  I had to seriously fight my fear that every time she started running she’d trip over her feet and plow head first into the dirt (with all the tears, pain and attendant risks of new FOP flare-ups).  In her first two years of play, I worried about this an awful lot.  But this year, I’ve been interested to note that I’m not so worried any more.  At age 8, Miranda has finally figured out how to run in a more upright way, and it just doesn’t look as dangerous to me as it used to (hallelujah for that).

And the league Miranda’s playing in?  It’s PERFECT for her – ball park is 5 minutes’ drive from our house, two evenings per week, and at this age, there are no “outs” (and hence no risk of some kid plowing into M in an effort to tag her before she reaches the base).

So far this year, Miranda is loving softball every bit as much as she did the last 2 years.  I suspect it has something to do with feeling just like a “regular” kid, and doing something physical in the face of a disorder intent on robbing her of movement (in your face, FOP).  It also doesn’t hurt that Miranda knows a lot of the kids on her team from previous years, and that a couple of her friends from her school are on her team.

GO MIRANDA, GO!

Right now I have an eight year old with Fibrodysplasia Ossificans Progressiva.  We’ve known about FOP for a number of years, so our family has been evolving and changing as we cope with the disorder in different ways during different stages of   life. We’ve experienced what it’s like to have a toddler with FOP, then a preschooler, a little kid and now we’re just edging into the big kid/pre-teen phase.  Other than infancy – we didn’t know about FOP until Miranda was 2 years old – the only significant childhood era we haven’t experienced yet is the teenage years.

I have, however, gotten to know a few young people with FOP.  As may be expected, they make their way through it with varying degrees of emotional adjustment, abilities and strength (in other words, just like all other teen in this world).

One gal who has impressed me quite a bit is Jasmin Floyd, who lives in the USA.  Jasmin’s family learned of her FOP when she was a young kid, and she’s now age 19 or 20 (Jasmin, sorry I can’t remember your exact age!).  Jasmin wrote an eloquent statement about what it’s like to be a young woman coping with FOP, and she’s graciously allowed me to share it in this blog.  Here’s what Jasmin has to say…

Did you ever think about what it’s like to not be able to do your own hair?  Or sit cross-legged?  I think Jasmin expresses her thoughts very well in this statement.

I hope Jasmin decides to turn her thoughts into an ongoing blog.  I’d love to hear more from her.

NOTE – I’m a lawyer and have a big trial for 2 weeks this month.  Therefore, I’m going to have to take a break from blogging until the end of the month, as I will be SWAMPED with work.  I should be back at it by the last weekend in April.

It’s Easter time…  This morning, my daughter Miranda and her brother sprang up out of bed, zoomed downstairs and started looking for painted eggs hidden by a certain seasonal rabbit. 

As it happens, it’s also a gorgeous, perfect day where we live.  The sun is shining, there’s no wind and the temperature is supposed to hit almost 20 degrees Celsius.  For me, this feels like the beginning of spring.

Miranda at the playground yesterday. Check out that blue sky (and lack of springtime Vancouver rain!).

Beautiful spring weather paired with Easter also perfectly symbolizes new growth, energy and all manner of good things.  Which is something I like to grab onto, because when your child has Fibrodysplasia Ossificans Progressiva, it’s all too easy to get caught up in the opposite – worry, fear and stress.  If I wanted to let myself do it, I could spend a bunch of time worried about what FOP is doing to my daughter’s body, fearing the next flare-up and stressed about the future.

"Should I take a chance and go down this tall, exciting slide? Or maybe turn around and think about how it's too scary?"

But – not when it’s a day like today!  Days like today are for happiness and optimism.  Here’s what I can focus on in Easter 2013…

- Miranda is 8 years old and loves her life.  She laughs, plays, argues with her brother, enjoys school, participates in Girl Guides and is looking forward to the upcoming softball season.  Miranda may have FOP, but this is a genetic status rather than an illness and she is healthy.

- FOP itself is quiet right now.  We had a scare with a flare-up on Miranda’s chest a few weeks ago, but it was short lived and pretty much disappeared within 2 weeks and (I think) left no new bone behind.  FOP can flare-up at any time, true, but on the other hand, Miranda might have no new FOP activity for a long, long while.  Her last break from flare-ups lasted about 18 months, and the previous one before that was 13 months.

- It’s my understanding that FOP research continues at a brisk pace, and that there’s a good chance that we’ll be seeing the beginning of drug trials involving people within the next 2 or 3 years.

- In May and November of this year, we’ll be going to, respectively, a conference of the Canadian FOP Network in London, Ontario and the International FOP Association’s 25^th anniversary celebration in Winter Springs, Florida.  At these events, we’ll have the opportunity to learn the very latest in FOP news and to spend time with our extended FOP family.  (AIIIEEEEE!!!   So excited about these events!)

With all of this in mind, I’m looking forward to a really great day today.  In fact, I think I hear a chocolate egg calling my name…

Happy Easter to you all, and may you too see a glass half full sitting before you.

Miranda sitting with her brother Owen. Perfect smiles for a happy day.

Our family arrived home late last night from our long-awaited, fantastic, marvelous trip to Florida.  Such a wonderful vacation…  Where to even begin describing it?

Well, how about beginning here…  Our trip was arranged for and funded by the great folks at Make-A-Wish BC & Yukon.  In case you’re not familiar with MAW, it’s a charity devoted to granting special “wishes” for children with life-threatening illnesses.  My daughter Miranda qualified because of her Fibrodysplasia Ossificans Progressiva.  Many kids with FOP have been granted wishes by MAW, including my co-blogger Suzanne’s daughter Erin McCloskey a couple of years ago.  FOP qualifies because it does, unfortunately, shorten a person’s lifetime, and in some instances, kids with FOP have passed away before reaching adulthood.  MAW experiences, however, aren’t about facing the reality of FOP or other distressing medical conditions…  They’re about fun, happiness and love.  The child selects a thing they’d particularly like to do, and then MAW makes it happen.  The child and family then get to have the fun of enjoying the wish, whether it involves travel, meeting a celebrity, or some other activity.  In our case, Miranda picked…  A trip to Disney World!

To be more exact, the trip was to a place called Give Kids the World Village on the outskirts of Orlando, Florida.  The idea of GKTW is that you go there for a week and stay in one of their villas, enjoy fun activities at the village and get free passes to Disney World, Universal Studios, Sea World and other attractions in the area.  GKTW is itself a charitable organization, and provides accommodation to families through various wish granting charities.

The whole thing started off for us with a great bon voyage party on Friday, March 15 at the White Spot (local British Columbia restaurant chain) on North Road.  Our wish granting volunteer, Carmen, met us there for food, fun and lots of gifts for Miranda and her brother Owen.  It was a great party, complete with Disney themed cake. 

The next day, Saturday, we woke up bright and early and drove to the airport to fly to Florida via connecting flight through Winnipeg.  We flew Westjet, which had given us a bunch of great gifts at our pre-trip party.  The Westjet folks were also super nice and helpful as we got on the plane, Miranda bouncing off the walls with excitement, ha ha.  It was a long trip, during which we also lost 3 hours of time (kind of like a really extreme daylight savings time change, LOL).  But…  At the other end there was a volunteer greater from GKTW, Stephen, who met us, made sure we got to our rental car and made it smoothly on our way to GKTW Village.  At GKTW, we were quickly signed in and directed to our villa, the townhouse-style residence where we stayed for the week.  All this travel stuff went off without a hitch and was as easy as it could have possibly been, thanks to Westjet, MAW and GKTW.

Our villa was great.  It had a small kitchen area, a comfortable living room with TV, 2 bedrooms and 2 bathrooms.  The kids’ bathroom was particularly impressive, with 2 sinks and a big, spacious wheelchair accessible shower and tub with whirlpool jets.  The outside was made to look fun and cartoon-like, with sort of a fairy-tale vibe to it.  For those in the know about GKTW Village, our villa was on the far side of the playground, in the newer area (built about 5 years ago, I understand).  We were very much at home staying there.  One very nice touch was that there was a stuffed Mickey Mouse toy awaiting Miranda at the villa upon our arrival – Miranda was thrilled about this.

Though our villa had a kitchen, we never cooked there.  Instead, all the meals we ate in the village were provided for us by a few different village restaurant options including the Ice Cream Palace, the Gingerbread House and Katie’s Kitchen.  The food there was very good and wholesome, especially the amazing breakfasts at the Gingerbread House.  Many days in a row, Miranda greatly enjoyed eating their specially prepared waffles with whipped cream and sprinkles made to look like Mickey Mouse. 

Gingerbread House from the outside...

...and on the inside. Check out the whimsical decor.

And so, finally, the theme parks…  We did a whirlwind tour, let me tell you.  The first full day, Sunday the 17th, we decided to have a quieter day to ease us into everything.  We spent the morning walking around the GKTW Village and doing fun things there, including 2 games of “dinosaur mini-golf” (perfect for my mini-golf loving kids), some video games and a ride on the carousel.  That afternoon, we went to Gatorland, one of the smaller theme parks in the area devoted to, you guessed it, alligators.  We saw lots, and lots, and lots of gators there….  And Miranda even got a gator painted on her face.

The next day we began our tour of the major parks.  Between Monday and Friday, we did Disney’s Animal Kingdom, Disney’s Epcot Centre, Universal Studios, Disney’s Typhoon Lagoon water park and Disney’s Magic Kingdom.  We did lots of rides, met lots of characters (and Miranda got autographs in her special book from almost every one), spent time in the sun, bought souvenirs, ate theme park food, etc, etc, etc.  All the parks were amazing, and luckily we had a special pass for people with disabilities which got us past many of the long lines (this was particularly helpful at the uber-crowded Magic Kingdom).  What did Miranda like the best?  She says the Magic Kingdom.  For me though, it was the Typhoon Lagoon water park, which was different from the other days in that it involved water slides, a wave pool and a “lazy river” for floating on inner tubes (ah heaven – and it wasn’t even very crowded that day).

By the silver globe at Epcot

With Thing 1 and Thing 2 from Dr. Seuss at Universal Studios Islands of Adventure

In front of the famous Disney castle

Miranda was a bundle of energy throughout all this.  Many of our FOP family friends who’ve been on a Florida wish trip recommended getting a stroller/wheelchair to use to preserve the wish child’s strength as they manoeuvre through the very big and tiring parks.  While I think this is very good advice, it wasn’t advice which we needed to follow.  Miranda has an unbelievable amount of stamina for this sort of stuff, and seemed to get by with only a modest amount of rest time.  I often asked her if she wanted to stop and take a break, and she almost NEVER said yes.  She was like the proverbial bunny from the battery commercial, go go go go go.  Frankly, she wore me and her dad out!

On the day we went to Typhoon Lagoon, we met up that evening at GKTW Village with Paula Zamudio and her son Nathan, an 11 year old boy who has FOP like Miranda.  Nathan and his family live in Florida, so it was a good opportunity to meet.  We had a short but sweet visit.  It’s always so great to get together with other FOP families and share our common experiences.

We spent our last full day at the Magic Kingdom.  That’s where Miranda discovered the joy of Disney pin trading.  You see, it turns out that if you buy a pin trader’s starter kit – lanyard with 4 pins attached – you can then trade pins with any Disney staff with a pin collection, and in fact the staff are required to trade with you.  Miranda was ALL OVER that…  She kept an eagle-eye out for Disney “cast members” (as they call them) and engaged in a number of pin trades.

We were scheduled to fly home late in the afternoon of our last day, so there was still time for one more theme park that day.  As such, we went to Sea World, the only place we hadn’t been to.  Though Miranda and her brother are well familiar with ocean animals from our local Vancouver Aquarium, they still really enjoyed seeing sharks, sea lions and all manner of other animals before we left for the airport.

Miranda was very sad to be leaving Florida, and GKTW Village in particular.  She said a number of times that she really wished the trip wasn’t over and that we could stay longer.  But, all good things must come to an end.  Here we are now, back at home and facing a mountain of laundry.  Good thing we have such great memories of our vacation, and a couple of hundred photos to look at and remind us how special and amazing the trip was.