An Open Letter to Newly Diagnosed Parents
Last updated: April 2022
If you are reading this, you have probably been recently told that your lovely child has spinal muscular atrophy (SMA). You probably have had to sit through various appointments with more doctors than you can remember assessing your child’s status.
You probably have also visited numerous websites, including this one, providing a lot of information about the typical progression of this disease. All of the information I am sure has painted a bleak picture in your head filled with multiple medical devices and a very short life.
New treatment options for SMA
While that is a distinct possibility, let me remind you that it is just a possibility. While it may be hard to believe, your child is very fortunate to be born now.
There are multiple (at least three) different medications available today that have been shown to dramatically reduce the progression of the disease. And if taken from an early age, the effects of each of the medications increase compared to someone starting later in life.
In addition to what is currently available, there are various treatments being tested that show promise. Furthermore, given the probability of a longer than typical life for someone with SMA, who knows what treatments will be developed during their lifetime.
Hold onto hope with a new diagnosis
Despite what is going through your head right now, there is hope. Hold on to that tightly.
If you are able to maintain that hope, just like every other parent, you will have to prepare your child for adulthood. Like every other parent, what preparation is needed varies from child to child.
Only you will have a firm idea of what is needed. Now, will your child be a famous athlete? In all likelihood, no they will not. But they very easily could work in the sports industry, if that’s what motivates them.
Don't set boundaries for your child
Try not to set more barriers for your child than they will already face due to their disability. The outside world typically, with exceptions, already looks down on your child as something to be pitied.
The outside world will keep telling them that they are unable to do something. They will think they know what your child’s capabilities are. Don’t repeat the mistakes of the outside world.
Be a cheerleader for your child, just like every other parent. Think of different solutions to help them achieve their dreams because it will require some creativity.
Push them to do their best, because everyone else will be expecting the least out of them. It will require a lot of work, preparation, and luck, don’t get me wrong. But it is necessary.
Providing the best for your child
While this pep talk (or at least I hope it lifted you with spirits) comes from an adult male without children, I have lost my fair share of friends with SMA that had parents make mistakes that I am trying to convince you not to make.
I still have friends with committed relationships, careers, and so-called lives. Aim for that for your child however they choose to pursue it. You owe nothing less to your child.
Do any other adults with SMA have advice for parents with newly diagnosed parents?
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