CHASA provides grants to help families purchase orthotics (foot braces). Orthotics help children with balance and walking and are often worn by children and young adults who have a diagnosis of hemiplegia. The letter below is from a mom who shares with us just how much the CHASA Orthotic Grant has helped her family.
I am writing with heartfelt gratitude to thank you for your orthotic grant donation. Without your help my beautiful blonde haired blue eyed 4 year old son, Jay would not be able to wear the orthotics that he needs to help him from falling and hopefully prevent him from needing the surgeries that many children with hemiplegia need throughout the years. I also want to thank you for saving me. The stress and financial burden of having a child with hemiplegia is enormous. Most people don’t understand as he falls somewhere between what many would consider truly disabled to what others see as barely a problem. However, when you are the mother of said child the tears fall freely daily even if you are someone who has always seen the cup as half full rather than half empty.
Let me provide you with a little background into the wonderful little boy that you are helping. We noticed that Jay wasn’t using his right hand when he was about 3 months old. After several months and several doctor visits an MRI confirmed that he had had a stroke either in utero or during his birth. I will never forget the moment the neurologist, who happened to be my friend at the time, told us that our little first born angel had a stroke. See, ironically I was a pharmaceutical representative selling a medication many of the CHASA children use to control seizures. I was blessed to sit in on many hospital team case studies reviewing the MRI’s and charts of children who had suffered traumatic brain injuries to try and assist the team with a plan to spare the children seizures on top of their many other hurdles. So it was a really hard pill to swallow when I realized I had missed the signs of his injury. It was also extremely difficult to see the MRI and truly understand how massive his bleed was (the doctor turned his computer screen away from me so I couldn’t see the true extent of it knowing I really understood the pictures). He basically has a big hole in his brain. Imagine the terror seeing that! In short, I was told that he might not walk, might not talk but that there was a good chance a child “like this” could go to college.
My husband and I drove the hour home in silence. When we got home I watched my strong husband who in 8 years I had never ever witnessed cry sob like a child. I too mourned the life I thought we would have and feared the future. I then immediately got on the computer and spent hours and hours searching and couldn’t find much. I felt like I couldn’t breathe. And then after several months of what seemed like hundreds of phone calls and waiting lists we finally got him an appointment for a visit at a therapy center. It was there that I met a therapist who told me that another mother shared with her a website of an organization called CHASA. When I got home I immediately logged onto the site and was so relieved to FINALLY find information that could help me to help my child. Even now, almost 5 years later I find myself sobbing as I write you this letter to both thank and let you know how much your thoughtful donation and this organization has helped my family.
Back to Jay. Mommy went into fix it mode and around 6 months old we began therapy 6 days per week. We maintained that schedule until this September when I had to make the tough decision to cut back to four days so that he could get a little schooling. Only two half days per week so that we wouldn’t totally upset his therapy. He has also attended 4 summer constraint camps and 8 mini (2-3 week) camps throughout the years (approximately $5,000 per camp and an hour drive each way 5 days per week).
With insurance, we still pay between $29,000 – $31,000 out of pocket per year for all of this therapy and his orthotics because the state of NJ will not issue Medicaid or Disability unless the parents are basically destitute. If you own a house or have a reasonable job, they will not provide any help or assistance. So I have had a weight on my shoulders for years. Don’t get me wrong, I feel blessed. As I girl I grew up poor sharing a bedroom with my single mom in our small apartment paid for by rental assistance (my mom has a permanent tracheotomy due to a car accident and couldn’t work). I was very skinny because I was too embarrassed to use the free school lunch coupons I was granted through the state because we were poor. I lied about my age at 11 to get my first job to help her out. I also worked four jobs to put myself through college. I never imagined I would have a job that would allow me to own my own home, let alone purchase a brand new one in 2006. I am thankful for what I have and have NEVER ever asked for a handout. I am thankful that we have had the means to pay for the services Jay needs to allow him to get stronger. However, when you have a child with a disability and you are downsized from a job that you held for ten years the money goes fast. When you get another job at 8 months pregnant and your entire team is downsized on your one year anniversary with this new job (two job losses in two years) and the insurance (which doesn’t pay for much) is through your job, the stress is enormous. The sleepless nights are endless. The missed therapies are torturous. And wondering if you can order new orthotics is painful. This hardworking woman fortunate enough to have had a good financial background came close to bankruptcy earlier this year. Thankfully, I recently finally landed a new job but we are still several months behind in payments. So the timing of your extremely generous donation is more valuable to us than you could ever imagine.
The good news is that all of his hard work has been paying off. The boy who wasn’t supposed to walk can RUN with the help of his orthotics. He can move his arm. He can use his hand; although his thumb continues to remain stuck we are considering Botox injections later this year. He has outgrown the orthotics that you are so kindly paying for but I have been afraid to call the orthotist for an appointment to make him new one’s because we owed him money that you are now graciously paying him. Now, thanks to you I will not be afraid to call him next week to schedule an appointment for his much needed orthotics. His foot has been starting to turn in again since he hasn’t been wearing them for a few weeks so again, your timing is PERFECT. Your kindness is profound and will NEVER, EVER be forgotten.
So again, from the bottom of my heart I say THANK YOU!! My little boy who doesn’t really understand all this says THANK YOU with every single step he will take each and every day with his orthotics. And every night when he puts on the orthotic that stretches his foot/leg when he sleeps to prevent him from needing any surgeries I will say a silent prayer to watch over all those who have shed kindness on this family.
Sincerely,
Jay’s Mom
Learn more and apply for a CHASA Orthotics Grant
Donate to the CHASA Orthotic Grant Program
Learn other ways CHASA Can Help
Meet other families who have a child or young adult with hemiplegia
