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When the Doctor Said My Son Would Only Make It to 4 Years Old

Diane Blair is walking for her son Alex and Spinal Muscular Atrophy this August. You can donate to the Cure SMA Walk here.***

“He will live until about 4 years old.”

Our doctor told us this when our son, Alex, was officially/unofficially diagnosed with Spinal Muscular Atrophy (SMA). Officially, because the doctor had experience with children born with SMA; unofficially, because the blood work hadn’t yet come back confirming it. In a weird way, we thought ourselves lucky because the websites and local doctors knew that the majority of children born with type 1 SMA die before their second birthday. We thought: We just doubled that!

SMA is a form of Muscular Dystrophy. It affects the way a person crawls, sits, walks, breathes and swallows. About one in 50 people are genetic carriers. SMA can affect any race or gender. As time goes on, a child diagnosed with SMA will get weaker and lose any and all muscle function.

What would I tell myself at the time of diagnosis that I now know?

Doctors don’t know everything.

Doctors cannot possibly know when someone will die because they often base their assumptions on what has happened in the past — not with the current research and knowledge that may still be forming.

Parents of children with the same diagnoses as your child know a lot. Ask them everything you can – no question is a stupid question when it comes to your child.

Children are fighters and have a way of proving us wrong. Have faith.

Alex turned 12 years old in February. He’s alive, goes to a regular school, has friends, loves everyone he meets and is a happy, curious, lovable kid.

June 2014 019

Don’t get me wrong, his life (or ours for that matter) has not been an easy one. He’s been hospitalized three times but each time has been shorter than the last. He’s had ear infections, colds lasting up to a month, pneumonia, paraflu, strep throat, C. diff, bacterial pneumonia, staph infection, a collapsed left lung, a fractured right femur, pneumonia again, sinus infection, back surgery and afractured left femur.

We know what to do when he gets sick and how to treat him at home. We have doctors in our corner who listen to us (and him) when needed. We also know things can change at any time and we must be prepared. We need to keep germs away because they’re the enemy. It’s not so much getting sick, it’s the inability for his weak body to fight the germs. We try not to keep him in a bubble. He needs to experience life.

We were initially told to stay away from the Internet for information. Some information you receive is correct and some is not. Some can be dark and scary. If I had to give advice to a parent of a newly diagnosed child with special needs, it would be this:

  • Have doctors in your corner who are willing to listen to you and your child — and if they don’t have the answers you need, know they will find it for you. They must be able to reach out to other doctors who specialize in the care you’re looking for. They must realize that they don’t know everything. If you don’t have a doctor where you live, find one elsewhere who knows what they’re talking about.
  • Connect yourself with parents who are also on the same journey as you and ask them questions — but know that even though the diagnosis is the same, they may do and say things you might not be comfortable with.  You need to weigh your options with your beliefs and the needs of your family. Unfortunately, I’ve come across quite a few parents who are angry and they may lose sight of what is important. Everyone deals with the stress of a child with special needs in their own special way. If you don’t understand where they’re coming from, you can respect that and move on.
  • I’d suggest seriously considering enrolling your child in a trial study if it’s available. This is how the researchers find cures and/or treatments. This is how you can help future children and their families who may receive the devastating news. You may see your child as a guinea pig, but if you don’t investigate the possibilities, who will?
  • Have a little faith – chose your path to help you get through this. Miracles do happen.
  • Love your child with all your heart and soul, and let them feel it. 
  • Try and have some time for yourself, your significant other and other children if you can. You don’t even have to leave the house. See if you can get someone to help you out just to give you a little reprieve.
  • If you’re on information overload, take a step back and regroup. 

We do the best we can with what we know and what will get us through this journey.

To learn about contributing to the Cure SMA Walk, head here.