It happens all the time after I tell someone about Sonzee. The innocent follow up question is always "what do the doctors say for the long term?” This usually results in me telling them while the spectrum of her disorder varies, most children with her disorder do not walk, talk, or feed themselves on their own. I always state we will do whatever we can for her, we are not saying never, but her disorder is limiting, in all ways. This is then followed by the seemingly innocent comparison. The one where the person is trying to maybe instill some hope into my life by saying that their child, a friend’s child, or a child of a second cousin twice removed has epilepsy and they are graduating from Yale or some other Ivy League college. (To be honest, Ivy League schools are not really on my wish list for any of my children, but I digress).
While the statement seems "benign", what I would love people to know is that the comparison to your child, your friend's child, or your cousin's child twice removed, is actually unfair. CDKL5 and many genetic disorders are limiting in the fact that they are genetic. When a gene in a body is incomplete, missing, or has an error it has a catastrophic impact on all areas of development. There is no medication that can fix it; there is no "system reboot" that can be completed. There is absolutely nothing that can be done to actually make the bodywork normally. Symptoms can be treated to an extent, maybe Sonya's seizures will one day be completely under control, but even if that happens, she will always have an abnormal mutation on her CDKL5 gene. This means that the comparison might as well be apples to oranges.
We can spend thousands of dollars on therapies, we can place her in every therapy the world has to offer, and they will help her, but they will not ever make her act like or be a typical child. When I am told that "doctors can be wrong", yes they can be, but not with CDKL5. I wish people did not feel the need to create small talk by saying "you never know what might happen". You are absolutely correct, I do not, however unless it involves a vial of CDKL5 capable of replacing the frameshift mutation on Sonzee's, than I am 99% certain that attending (an Ivy League) college will not be in her cards (but she will be happy to accept an honorary degree from one).
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