Monday, January 24, 2011

Where is her walk-a-thon

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.


  1. I'm thinking of you. I can tell you that I have a lot of friends whose children have various issues that are STILL undiagnosed after many years, and may never be diagnosed. They get help based on their symptoms, not their diagnosis. And there is still many out there to help - with equipment, animals, etc etc. I promise! There are plenty of organizations that help people that need it, you might just have to look harder! Hugs!

  2. Or, should I say, diagnosed with something so rare that only a few people have it - or a certain chromosome deletion/translocation, etc etc that it's not even called anything. You are definitely not alone in the "rare disorder" group!

  3. Thanks F! Sometimes it feels so isolating. I guess I will just have to keep digging. :D

  4. Its been 2 years now that we finally received Lachlan's diagnosis of RS and every day has become more of an internal struggle for me. People often ask me "Is your son autistic?, Whats wrong with him and why does he shake his head back and forth like that? Will he out grow his problems?" I no longer tell people or even doctors about his diagnosis. Each doctor runs to the computer to google and then becomes excited at what many refer to as an "exceptional anomaly".
    I had to force myself to STOP researching and begging pediatricians to assist me in becoming more knowledgable.
    I want answers, I want to know what his future holds, I want to know that I am not pushing him more then I should.
    I no longer donate to any charities. I worked for one of the worlds largest non-profit orginizations and resigned. I could not wake up one more morning and know that the US Government spends almost 11 billion each year in assisting foreign countries with deworming, AIDS education and food assistance. Only 3% of govermental funds goes toward neurological research and almost 2% of that is to research autism. The remaining one percent goes to thousands of other neurological research.
    Many mothers of RS have started their own blogs as source of documenting their childs progress, as well finding it theraputic. I have found that I cannot convey my own thoughts of my sons disorder or even find the encouraging words that many need.
    I guess the point I am trying to reach is...YOU ARE NOT ALONE and you do NOT have to give more then you already do. Take your $3 dollars and spend it on Abby wastefully. She is beautiful and so are you for being so kind. God Bless your family!

  5. Thank you so much for your words Skydreamer. Sounds to me like you are more eloquent about your son's RS than you think. :D

    Sometimes it feels so selfish to want to say no to every charity but feeling guilted into it. What you wrote about how much (or rather, how little) funding goes to neuro research hurts my heart. I know there are not enough dollars to research every rare disease but it pains me that so many diseases are so "over researched" while others have no research at all.

    Thanks so much for sharing!