The Jett Foundation Fighting Duchenne Muscular Dystrophy

When A Child Falls Down

January 29, 2016

Jett didn’t just completely stop walking over night.  His weakness was progressive and became worse over several years, most notably around the age of 8, when, along with another sign – he started falling down.

 

As his parent, I was able to measure the progression of Duchenne in Jett in several ways, for instance, how many piggy back rides did I give, how many stairs he could climb, how often he used his electric scooter, if he could climb out of the pool himself – but the most devastating and potentially dangerous symptom of progression that I saw – was the collapsing. Let me tell you, falling is different.

 

Children fall. They run, they trip and they fall down – often.

 

But Jett was not running, tripping and falling – Jett was collapsing. His muscles in his thighs were becoming weaker, and they would simply just give out. Jett would end up in a heap on the floor, in tears and in pain. The collapses came without warning and started happening a few times a week. As he got a little older, the collapses became more frequent and increased to a few times a day. The increase in falls coincided with more time using a mobility device, an electric scooter to a small mini power-chair. We all felt safer when Jett would conserve his strength for walking when he wanted to walk, it minimized his fear, and mine, of those devastating collapses.

 

What made the spontaneous collapses even more concerning were the warnings and stories we heard from others in our community – physicians, physical therapists as well as many seasoned parents who warned us Duchenne newbies that if your child falls and suffers a fracture – he will likely “never walk again.”

 

Never walk again, the very activity that I knew was a game-changer and a life changer for Jett.

 

But no matter what I did, which included additional intensive physical, occupational and aqua therapy, encouraging him to conserve his walk time by using a scooter, the use of night splints to prevent his heel cord from tightening up, stretching him every single day – and let me tell you, as an egocentric type A personality registered nurse, I thought I could beat it – but the collapses just kept coming. And the physical therapists told us, they could not bill our insurance – we had to pay for his therapy because the goals of PT are to get better, to become functional – and that never happens with a diagnosis of Duchenne. Our PT’s told me that their goal for Jett was to just maintain range of motion, they knew they could not improve his function. But I pushed back, in the end – they were right.

 

As he approached 12 – 13 years old, he seemed to be falling harder, more frequently – and at that age, middle school, he was becoming less confident to stay on his feet and felt embarrassed if he collapsed at school in front of his peers.

 

Finally, when he was just 14 years old, and barely able to stand – but wanted to keep some independence to take a shower, he took his final fall. It didn’t matter that I was standing next to him or that the shower chair was right behind him, he collapsed. There was nothing I could do to catch him. He landed at the bottom of the shower, screaming in pain. When he finally calmed down – he told me, “it just is not worth walking anymore mom, I am just going to stay in my chair.”

 

What do parents of non-Duchenne children do when they see their child fall? What are their reactions? Imagine if your child would fall without warning, risk breaking a leg that meant they would never walk again?

 

From what I understand and have seen with my own eyes – boys on eteplirsen who are walking, are not falling down as often and some not at all, unexpected. Some boys on eteplirsen (increase in osteoporosis related to chronic corticosteroid use) have had fractures (due to tripping, not collapsing) and they’re walking again, completely unexpected. Boys and their families are living without the fear that they will collapse and hurt themselves. These boys are not only much safer, they are likely not using mobility devices as frequently as those following the normal trajectory of Duchenne and they are walking with more confidence and importantly their quality of life has drastically changed, improved – just because they are not falling.

 

I am not a researcher or a scientist, I am a mother of a 20 year old with Duchenne. I am a community advocate and speak to hundreds of families every week – I know that these dangerous collapses can be predictive of these young men becoming non-ambulatory.

 

Contrary to the assumptions made in the eteplirsen briefing documents, there is no amount of physical therapy or coaching that a parent can do to keep their kids walking. I wish there was. And while trying to keep them safe by using mobility devices, short of having them never walk, even if they still can, you can not prevent them from falling, it’s just too unpredictable. I wish I could have.

 

When you have a child with Duchenne, when he starts collapsing, and the collapsing increases –  he has likely started the horrific cascade of never being able to walk again – if eteplirsen can help keep kids from falling, that – in of itself – would be nothing short of a miracle. Unlike most moms and dads, parents of those with Duchenne can not catch their kids when they fall.

 

Here is another story of a caregiver who witnessed many of the same things:

As you know, Andrew is 18 now and in a power wheelchair full time since May 2007. As I sit here, I close my eyes, and I can see the so many times he was trying to keep up with his older brother Christopher or playing soccer with his friends on the school playground, or playing knee-hockey in a hotel hallway when his brother was participating in travel hockey. Each time was the same; sad, scared, frustrated, hopeless, useless, hypocritical. Those might seem like a strange combination of feelings, but I would watch this beautiful young boy so filled with life, so wanting to participate in everything, so active, who was such a great dancer, he’d fall, hurt himself and would either be frustrated or embarrassed or feel that he did something wrong or not as good is his brother, watching him lose confidence… And what could I do to change it, nothing!!
I stood by knowing that it was going to get worse, knowing that there was nothing I could do to prevent it or help it or stop it… All I could do was scoop him up, clean him up, kiss him and hug him. Tell him that’s OK buddy we all fall and then when he got older I couldn’t scoop him up, but I could still clean him up and hug him and tell him, “your legs just don’t work like everybody else’s” and then when he got a little older 10, he understood what Duchenne meant to his life.. It all stinks, but for the boys we put on a positive can-do face, we create a new normal and we orchestrate opportunities for them.

Sorry for the ramble, quiet morning and a cup of coffee and you asked me how I feel never a good combination smile emoticon

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