Every time I check out at the local grocery I am asked the same question. "Would you like to donate to help children with special needs?" Every time I am asked this question my mind goes. I want to say "I am, every single day when I have to buy the new therapy equipment or pay for the latest specialist visit." Or "yes, but will my special needs child be helped?"
What I do say is "sure" and pull off my $3 tag to help Saint Jude or Jerry's Kids or whatever their charity of the month is. I leave the store feeling crappy because I know I shouldn't feel so resentful about giving but I do. I can't help it.
When I browse the internet doing research about RS or venticulomegalies or posterior corpus callosum hypoplasia I am met with site after site collecting money for CP or Downs or Juvenile Diabetes or another commonly known disease or disorder. And every link to collect your money or sign you up for a walk-a-thon or whatever else is out there makes me feel sad.
Where is Abby's walk-a-thon? Where do I click to donate money to RS research? Who will help her when she's older and has medical needs and I can't help her? What organization is going to help her afford the assistive equipment or dog or whatever she will need?
It is one of the most challenging parts of having a child with a rare diagnosis. The research is limited. The information about prognosis is limited. And the help is limited.
We will never know what causes RS... at least not in our lifetime. There is only one study being conducted on RS and it is so poorly funded that it is going nowhere. It isn't even focusing specifically on RS because the scope is too limited. We are struggling with whether or not to even bother participating. Basically if we do it will be AT OUR EXPENSE. Like financing her care isn't expensive enough.
I guess we will only ever get answers by living it and experiencing it. I can live with that. I wish I had more hopeful literature to read that would answer some of our questions about her future. But instead we will have to be patient and see what life brings.