Steven's Hearts for Chiari Malformation

My Message

Hi Everyone,

I want to take the time to introduce myself and my cause.  My name is Steven and I just turned 6 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 right arm or hand}, 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) 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}.

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 foundation 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.  

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 the foundation 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)

P.S.  Over the next few months I will also be organizing a fundraising event with another Chiari Warrior, please stay tuned for details.

Event Date
Nov 12, 2015 12:00 AM
Location Name
First Location

Event Details


My Team

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Leave a Message

Sharon Hogue left a message
May 21, 2018 8:40 AM
Wishing your family all the best. Steven you are obviously a very strong boy and have wonderful parents that will challenge this with you!
Sharon CC Group donated $25.00
May 21, 2018 8:37 AM
Kit donated $65.50
May 15, 2018 10:43 AM
Joanne A donated $32.75
May 15, 2018 8:25 AM
Valerie Meloche left a message
May 14, 2018 9:45 PM
Hoping the best for your little boy. Keep faith! ??
Valerie Meloche donated $10.00
May 14, 2018 9:44 PM
Rod McNamara left a message
Dec 17, 2017 5:02 PM
Hey Crystal Sorry this took so long. I hope things are going well for your family. Merry Christmas to all !
Rod McNamara donated $200.00
Dec 17, 2017 5:00 PM
Leonie Peressini donated $50.00
Aug 31, 2017 2:35 PM
Grandma left a message
Aug 29, 2017 7:39 PM
Stay Strong Steven. Love you
Melody Spice donated $100.00
Aug 29, 2017 7:38 PM
Ari Benchetrit left a message
Aug 11, 2017 12:16 PM
Good Luck with your fund raising goals and hopefully on the path for a cure for your angel and all those affected!! Amen!!
James Ari Benchetrit donated $50.00
Aug 11, 2017 12:15 PM
Friend of SickKids donated an undisclosed amount
Aug 11, 2017 1:40 AM
Tina left a message
Aug 1, 2017 6:40 PM
My son had decompression surgery at Sick kids in 2014, the hard part is finding a NS that not only Knows about Chiari and decompression surgery but also about things like retroflexed odontoid, craniocervical-instability and basilar invagination....we had to go state side to even find a NS that could treat these extra conditions, Unfortunately we do not have the half million dollars that it will cost for our son to have the rest of the surgeries he needs state side
Eden left a message
Aug 1, 2017 10:22 AM
I also have chiari malformation and syringomyelia, I was diagnosed at 17 at sick kids. I hope your son gets the proper healthcare and answers he needs!
Eden S donated $25.00
Aug 1, 2017 10:20 AM
Anthony Pickard donated $100.00
Jul 24, 2017 12:22 PM
Crystal left a message
Jul 24, 2017 12:20 PM
Steven we are so proud of you
Crystal Spice donated $100.00
Jul 24, 2017 12:19 PM
Esya Osherovsky donated $100.00
Jul 23, 2017 2:29 PM
DV donated $10.00
Jul 22, 2017 6:11 PM
Rossana DE Santis donated $ 20.00 left a message
Jul 22, 2017 10:42 AM
Lots of hope and love ..
Carolann Candy left a message
Jul 22, 2017 9:57 AM
Sending love, hope, help.
Carolann E. Candy donated $50.00
Jul 22, 2017 9:56 AM
Michelle Jacques donated $5.00
Jul 22, 2017 2:26 AM
Sanchez donated $5.00
Jul 22, 2017 12:39 AM
SC donated $5.00
Jul 22, 2017 12:30 AM
dylan thomas donated $20.00
Jul 22, 2017 12:23 AM
Mark donated $10.00
Jul 21, 2017 10:10 PM
Frank & Meghann St Clair family donated $50.00
Jul 21, 2017 9:43 PM
Duke donated $5.00
Jul 21, 2017 9:17 PM
Mark Rotelli donated $10.00
Jul 21, 2017 9:15 PM
Stu Moran donated $5.00
Jul 21, 2017 8:40 PM
Stu Moran left a message
Jul 21, 2017 8:37 PM
best wishes
Frisky donated $5.00
Jul 21, 2017 8:32 PM
Greg S. donated $6.55
Jul 21, 2017 8:23 PM
Chris Rosales donated $6.55
Jul 21, 2017 8:12 PM
Joshua left a message
Jul 21, 2017 8:03 PM
I hope my little donation can help make a big difference!
Friend of SickKids donated $20.00
Jul 21, 2017 8:02 PM
Friend of SickKids donated an undisclosed amount
Jul 21, 2017 12:00 AM