Hi Everyone,

I want to take the time to introduce myself and my cause. My name is Steven and I am just 10 years old an accomplishment that may seem small but might not have happened without the staff and doctors at Sick Kids Hospital and a very determined set of parents to find out what was really happening to me. That journey took them over a year to get a dianosis, but none of us were prepared for the outcome of my diagnosis as it would be life changing!

Let me rewind back to 2015 when I was just a regular little boy who liked to play wrestle with my brothers and chase my friends. I was good in school though I just started junior kindergarten and for the most part I was a really healthy little boy who got the occasional headache and often got tired fast, but I didn't let that stop me. Around the summer of that year I started finding it hard to walk a lot so always wanted to be carried or to ride in a wagon of some sorts and then in November I got a bad shoulder injury that would keep me awake at night. Literally my mom told me I would scream in pain in my sleep, she knew something was really wrong with me. I didn't want to do anything cause I was always in pain, but all the tests kept coming back normal. What was wrong with me?

Finally my mom and dad got me into see a great doctor at Sick Kids Hospital who actually listened to what they were saying and promised them we would get to the bottom of what was going on. Through the next 6 months I was put through x-rays, a ct scan and blood work.(I know mummy and daddy were scared so I tried to do silly things to make them laugh even though I was in pain). Everything was normal, so he ordered a full body MRI (that's a special machine they put you in where they can see everything that is going on in your body like my bones and things). I'll never forget the day that we got the results, mummy and daddy were holding back tears, I could tell that they were scared but didn't want me to see.

The doctor told us that I have a problem with my brain which is why I was having shoulder problems...I know eh? I didn't get it either, but I'll explain it to you like my mummy and daddy explained it to me. I was diagnosed with Chiari Malformation Type 1 (a rare brain disorder that only affects 0.1% of the world population) which means my brain is too big for my skull and is herniating out of place and causing pressure to build up in my spinal cord which is called Syringomyelia which is like a blister in my spine that is filling with fluid. Most cases are only a few millimeters, mine stretches my whole spinal cord, which is why I had shoulder problems as it was compressing all of the nerves.

I was operated on a week later in a 6.5 hour procedure called decompression surgery with Laminectomy and Duroplasty and stayed in hospital for about a week, but that was just the start of things. I spent months in bed and had to do physio therapy as well.

Chiari Malformation is very hard to diagnose and there is only one test that can tell if you have it or not and that is an MRI. There are so many symptoms like: Headaches (are the classic symptom of Chiari malformation and usually occur after sudden coughing, sneezing or straining), Neck pain, Unsteady gait (problems with balance), Poor hand coordination (fine motor skills), Numbness and tingling of the hands and feet {I can no longer feel my entire upper right side and the doctors believe that it is permanently}, Dizziness, Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting, Vision problems (blurred or double vision), Speech problems, such as hoarseness, Ringing or buzzing in the ears (tinnitus), Weakness, Slow heart rhythm, Curvature of the spine (scoliosis, lordosis or kyphosis) related to spinal cord impairment {I have already started getting this}, Abnormal breathing, such as central sleep apnea, characterized by periods of breathing cessation during sleep {another condition I am being treated for}.

In May of 2018 I was told that I would again need another surgery as I have lost all feeling on my upper right side and cannot walk long periods of time without losing feeling to my feet. My Dr. was worried that eventually I would lose the feeling on my left side as well so he wanted to prevent it. On June 19th I had my second decompression surgery except this time they had to use a bovine patch and I had to celebrate my 7th birthday in bed. The Doctors told my mummy and daddy that I probably will never get the feeling back on my right side which is scary as I now have to learn how to do everything with my left side as I could get really hurt if I lead with my right side as I no longer feel temperature or pain.

Before my surgery they diagnosed me with Kyphosis which is a curvature of my upper spine. This is another side effect of my chiari and another reason I am fighting so hard on a daily basis.

In December of this year I had 3 more doctors added to my team of Doctors and found out that next year I could possibly be facing another life altering surgery to try and correct my obstructive sleep apnea.

I will never be cured and every day is a struggle, but I am not going to let it stop me. Want to know why? Cause I am determined to get your help to start a research fund here at Sick Kids Hospital so they can start researching the causes and maybe one day discover a cure or at least a way to help people like me manage what we are going through. This will be the first research of its kind here in Canada.

There are a lot of things I will never be able to do because of this condition, but that doesn't mean that I can't do big things to change what's happening around me. As my mummy always tells me every little bit helps, so I am hoping you will help me out here in reaching my goal of raising $50,000 to start this research fund in hopes that no little boy or girl will go undiagnosed again and no parents will have to question the whys and what do I do nows...You can do it I know you can and I would appreciate any help that you can give to us.

Please support me by giving generously.

Thank you.

Yours truly,

Steven Spice

(with a little help from my mummy Crystal Spice and Daddy Anthony Pickard)