John's Journey

John is my 11 year old son. He is such an amazing kid! He loves to sing and music is a huge part of his life. He is very caring and giving toward others. He is always willing to help anyone who needs it, in any way he can.

In August of 2021, he was diagnosed with a Rare Genetic Bone Disorder known as Klippel-Feil Syndrome. After much testing, MRI, CT, and X-Rays I was told it would probably be years before he started having problems.

Less than 8 months later he was experiencing a loss of feeling in his feet. He was rushed down to Riley Children's Hospital and admitted. Within a few days, he underwent a major spinal surgery that saved his life. The next 3 months were spent in a neck collar at home. Since this surgery, he has had a major loss of hearing believed to be related to his condition.

Now we are here, 10 months after surgery, to find out that he will be needing to have another spinal surgery very soon. The previously placed screws have shifted as he is at the age of a major growth spurt. He has developed a Chiari Malformation that is putting pressure on his brain. He has a diminished flow of CSF (Cerebrospinal fluid), and more spinal stenosis.

What this means for John, is that he will need to undergo another high-risk surgery in hopes to stop any further damage and prevent him from being paralyzed.

As a single mother, this is again very devastating news. I previously spent 3 months home with him when he needed me most. I am here asking for help to ensure that I can spend as much time as I need to with him during his recovery from his upcoming surgery.

I truly will appreciate any help possible to make this happen. He needs his Mommy by his side through this very difficult journey.

The funds will be used to pay for the things needed during the hospital stay, used to make any new accommodations he will need to our home during the recovery period, and also to be sure he can be as comfortable as possible for what may be a very long recovery. Also to pay the cost of living during his recovery so I can be at home with him the entire time.