Shyanne was born 10 weeks premature in February 2013 weighing only 2lbs. She spent nearly 2 months in the NICU at Winchester Medical Center, she thrived and grew amazingly during her stay. Everything seemed to be going as it should, she did meet many of her milestones late but that was to be expected. It wasn't until she was 18 months old that we began to question if something was wrong, she begun to approach her 2nd birthday and still was not walking. We went to her 2 year check up and our doctor gave us terrifying news, he believed Shyanne had Cerebral Palsy but we of course had to confirm this diagnosis with a neurologist. We began therapy immediately and waited 3 months for a neurologist appointment then a MRI for an official diagnosis of Spastic Diplegia Cerebral Palsy.A nuerological condition that affects muscle control and coordination. Affected people have increased muscle tone which leads to spasticity (stiff or tight muscles and exaggerated reflexes). Thus began our Cerebral Palsy journey, we had no idea what to expect.. We were told, “Oh she will just need therapy and leg braces.” What they can't tell you is to what extent it will really affect your little one and your family. The countless doctor and therapy appointments (living in the car it seems at times) being told that your daughter wont get new leg braces sent until your balance is paid even though you pay a $100 religiously ever month. Leg braces she wears daily causing sores and tears because they hurt so bad. Having a insurance company tell you the therapy your daughter desperately needs wont be covered because she was born with her Cerebral Palsy and it wasn't caused by accident, injury or surgery. Having to choose between physical therapy and occupational therapy because your insurance will only cover 35 sessions a year. Missing two to three months of needed therapy a year because you have ran out of covered sessions and cant afford the out of pocket cost of nearly $400 dollars a session. The waiting 6 months for insurances to approve a new posterior walker because you daughter has outgrown her other one. Seeing the disappointment in your child's face when she can't run or jump like other children (and she has begun realizing this) or when she falls countless times because she doesn't have the balance most do because of her Cerebral Palsy and she looks at you and says I'm just so clumsy, has to be the worst part of it all! You have to hold back tears and cry later when she can't see because it breaks your heart for you child to have to experience this when all she wants is to be a kid. But I must say our journey hasn't been all terror we get to celebrate with our daughter when she accomplishes what seems to be small thing to most but are huge to a child with Cerebral Palsy. We also get to be very thankful and lucky that our child has a moderate case of Cerebral Palsy as some kids and parents are not that lucky. The excitement you and her both feel when she finally takes her first steps even if its at 2 and ½ with the aid of leg braces. The excitement in her face when she gets the pink “walking sticks” (as Shyanne calls them) forearm crutches she wanted so badly. Working week after week to teach her to walk with her walker and her looking at you saying “I DID IT” when she can finally step up a curb using the walker. All of these trials and accomplishments have left us spending countless nights awake searching for something, anything, to help our daughter live a more normal life and childhood. This searching brought our family to SDR-Selective Dorsal Rhizotomy. SDR can be a life changing surgery for those with Cerebral Palsy, this procedure will cut the sensory nerve fibers that are causing spasticity to reduce if not eliminate the spasticity experienced. This will help Shyanne walk better, possibly be able to run and jump for the first time in her life, experience less pain, and reduce complications later in life. We are taking Shyanne to St. Louis where the procedure will be performed by Dr. Park a neurosurgeon at St. Louis Children's Hospital, this procedure has been performed over 3,000 times in St. Louis and Dr. Park is the best in the nation to perform the procedure, hence why we are going all the way to St. Louis to have it done. We are doing fundraisers to help get Shyanne to St. Louis and so that we can afford to have this procedure done, because as you can imagine it is a VERY expensive procedure, it will cost nearly $20,000 to have the procedure done and get the equipment she will require after the procedure, if the insurance approves and covers their portion.
Please help our family get Shyanne to St. Louis for this life changing procedure!
- Lindsey Moszeter
- Larry Hensley
- Danny & Nancy Hill
- Amanda Peters
- Karen O'Field
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