OUR FAMILY STORY OF LIFE WITH FSHD
The following article written by Marcel Albert appeared earlier in the FSHD Global newsletter:
My name is Marcel, my wife Rachael and I have a beautiful son Mitchell who is now 4 and-a-half years old and was first diagnosed with FSHD at around 18 months.
I’m writing this to hopefully raise awareness of a terrible disease that is unknown to most and certainly was to us up to about 3 years ago even though it is the most common form of Muscular Dystrophy that can affect anyone as a third of cases start spontaneously with no prior family history.
We realised Mitchell’s development wasn’t as it should be before he was one year old and now with the benefit of hindsight there are things he had trouble with much earlier that can be attributed to FSHD such as the difficulty in breastfeeding and other little things you don’t really think much of at the time.
We will never forget the day at the Children’s Hospital in Randwick where we were told our son had FSHD and what that can mean especially with such an early diagnosis. You wouldn’t think it’s possible to cry as much as we did that night and still do sometimes, but crying doesn’t help anyone, least of all Mitch.
Rachael and I were subsequently tested where we learned that I also have FSHD although then at age 37 and
now 40 with no symptoms what so ever. Unfortunately Mitchell wasn’t so lucky and his symptoms are getting
worse all the time. The word “progressive” doesn’t mean anything until you see it happening.
My parents and brother were also tested and came back negative so it has started with me, just like that!
JUST LIKE ANY OTHER KID
Mitchell is just like any other boy his age, into Lightning McQueen, Ben 10, Scooby Doo, playing with his
friends, riding his scooter and just having fun.
He has a great sense of humour and is just such a fun and happy boy and offcourse like any other 4 year old can test you to your limits sometimes.
He always wants to “trick” us one way or another and thinks it’s the funniest thing in the world to throw dads Still blissfully unaware thongs in the pool.
He loves dress ups and we’ll often look for Mitch only to find one super hero or another or Buzz Lightyear,
Woody or Dorothy Dinosaur.
WHILE HE CAN
It is great that he has such good friends and is happy doing all the things a kid his age should be doing but as parents it just breaks your heart seeing him get weaker whilst all the other kids are getting stronger.
He always tries to keep up but offcourse cannot. He has many falls and has heard “be careful” so many times he must think it’s his name.
Without wanting to spoil him with too many toys we always invent a reason why he is getting this or that such as a reward for being so good during a long day at the hospital or for wearing his “boot” (a splint for his foot) for the first time, and for example will give him a new scooter even though he has one already because he can ride it better than the old one, or a new “power wing” because he can ride it well and loves it, we want him to do as much of this while he still can.
The things and activities he’ll be able to do will become more and more limited and the first time that really hit home was a little while ago when I had to dismantle and get rid of the trampoline that Mitch “helped” me put together and only a year earlier was still able to do fairly well.
This was replaced with a new cubby house, which he loves and has now forgotten all about the trampoline that had to go because it was “getting old and might break soon”
Mitch is now getting to the age where he is starting to realise certain things are different for him than other kids.
The first was a little while ago when at his grandparents in Cronulla he was sitting on a wall with grandma when he asked “grandma..why can’t I smile” to which grandma had such a good response saying “you smile with your eyes, we know when you’re smiling” and that seemed good enough for him.
He is now also starting to ask other questions and why he is the only one that has to wear a boot and that he doesn’t want to. We simply say that some kids have to wear glasses and they might not want to either. But soon the day will come that these simple explanations won’t suffice.
We are so scared for Mitchell’s future and the struggles he’ll have to face in his life.
Will the school he goes to still be suitable in a few years? Will there be kids who make fun of him? Will he get left out? Will he lose that great fun personality? Will he ever be able to drive a car and be independent? Will he ever meet a girl who will love him? Will he be in pain as so many with FSHD are? The list is endless…….
A few weeks ago he got measured up for a wheelchair and soon will be going back to try out some of the
different chairs available. I can’t describe what it’s like to see your child in a wheelchair for the first time.
Up till now we’ve gotten by with a stroller when there is a lot of walking and this is hopefully the extent to which the chair will need to be used.
We don’t know where life will take us and where we’ll be in 5 years but do know that whatever happens we’ll continue to make to most of it and keep having as much fun as possible and be positive because that’s who we are.
Hopefully one day some very smart people may find a cure for this horrible disease.
Thank you very much for having taken the time to read this,
Please email email@example.com if you have a story you would like to share.