Nicholas’s Chiari Journey

I’m not really sure where to start on this, never did we think we would be asking for this type of help or support but God has a plan for our little boy and family. We very recently found out our 7 year old Nicholas has Chiari Malformation type 1 (Chiari malformation is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
Chiari malformation is uncommon, but increased use of imaging tests has led to more frequent diagnoses) he is herniated 13mm and also has a syrinx on his spinal cord. We originally went to the Doctor for increased headaches and fatigue in which he referred us to Riley’s Children’s Hospital for a pediatric neurologist. He was ordered to get a MRI on his head to cancel anything major out, we then received the phone call from neurology that he needed to see a neurosurgeon and they got us in right away.  He is now going into his second MRI on his spine in order for him to get surgery.

As of right now he has to get decompression surgery (Chiari decompression surgery removes bone at the back of the skull to widen the foramen magnum and create space for the brain. The dura overlying the herniated tonsils is opened and a patch is sewn to expand the space, similar to letting out the waistband on a pair of pants. The goals of surgery are to control the progression of symptoms, relieve compression, and restore the normal flow of cerebrospinal fluid).  The neurosurgeon wants to see the rest of the spine due to the syrinx, he could only view part of it since the first MRI was only of the head. This has all been very fast and stressful to say the least. We are looking at sometime in January for his surgery.  

We weren’t sure on the amount to ask for due to not knowing how much insurance will cover, or the amount of trips to Riley’s we are about to have, or the number of days we will miss work, or the help with the other three kids, anything will truly help. I was so against asking for any help I just don’t have a clue on what to expect or how we are gonna get through this. Even if you can’t  donate please share this to raise awareness for Chiari, I never in a million years thought we would be going through this but maybe someone else is too and this can help them get the help they need. If you see Nicholas or want him to know you are thinking about him don’t hesitate to give us a call to talk to him! Thank you for your time in reading this and for anyone who helps us in anyway along this long road we have ahead of us!