All funds Collected on MY WISH TO WALK are reflected under this Campaign
ALESANDRO'S WISH TO WALK - Visit our website!
We are hoping to raise a total of $150,000 to help Alesandro walk for the first time. This includes:
- $100,000 for the SDR surgery in St. Louis and related expenses
- $50,000 for the post operation rehabilitation program
Alesandro's Story was featured on GLOBAL NEWS with Christina Stevens, Click here to watch!
TORONTO — According to several families with children who have cerebral palsy, no specialist will sign the forms necessary for OHIP to cover a crucial surgery for Ontario patients in the U.S.
The families are hoping to get selective dorsal rhizotomy surgery, which has the potential to allow their children to walk without any help and is an insured service, covered by OHIP.
However, to get the coverage families require a signed form from a doctor saying the surgery would be appropriate treatment for their child.
The mother of six-year-old Alesandro Ciampa says they can’t get that form, even though she approached pediatric neurosurgeons she knew had signed the papers for other children in the past.
“I think we just somehow missed the boat because we were told they can no longer assess him,” said Shana Randhawa.
She said she was told “no” everywhere she tried.
WATCH the full story on Global News!
TD CanadaTrust (004)
Transit: 1202 Account: 6355825
BMO Bank of Montreal (001)
Transit: 0353 Account: 8981-318
About the Fundraising:
I am Alesandro's Mother, and I am calling on you for your help. For the past 3 years, I have been researching a surgical procedure called Selective Dorsal Rhizotomy (SDR) for my son. This procedure is offered at St. Louis Children’s Hospital in USA.
I saw so many documented cases of children from all over the world whose life had been changed drastically by this surgery. All the children improved by leaps and bounds. The ones who were wheelchair bound were using walkers post-operatively. The ones who were using mobility aids such as walkers (like my son) were walking independently post-operatively .
Every time I looked at my tiny child though, I was so scared to do this major surgery. My heart would clench and I would think “maybe he’ll improve” or “why take such a risk”? But as he grows taller, the spasticity (muscle tightness) puts more and more pressure on his muscles, joints and bones which will ultimately deform. Already, his hips are displaced by 30%.
Last October however, I met a little boy named Aiden and his mother Stephanie through a chance meeting at Bloorview Children’s Rehabilitation Hospital. I saw this child who was about my son’s age striding around the hospital, confident, happy, pain free. Us moms got to talking and I found out that this boy had had the SDR procedure done. This of course led to more questions, more research, more conversations.
I finally applied to the hospital to see if Alesandro would be a good candidate for the surgery. I was hoping that Alesandro would be accepted. Imagine if he could get around the house himself? Bathe himself? Feed himself? Get a glass of water or go to the bathroom by himself, without waiting, sometimes hours for someone to help him, or crawling on his hands and knees to get there?
My expectations were surpassed when I received the acceptance letter from Dr. T.S. Park, the Pediatric Neurosurgeon who performs this procedure. It stated that “Alesandro will be able to walk independently in ALL Environments”.
I think I didn’t fully absorb this until later that night when I cried myself to sleep; Overwhelmed, remembering all the times he asked me “Why did God give me CP? How come Niko (his baby brother) doesn’t have CP? I hate CP!!!!”
I hate Cerebral Palsy too. It’s always there – I’ve tried “Radical Acceptance”, but it’s hard when you see your child’s dreams wither away time and again every time he isn’t included in a soccer game, a hockey game, a game of tag…Over and over again, as you try your best to offer a hollow comfort.
The next step was OHIP coverage. I had found out about a couple of kids who had received OHIP coverage for at least part of the procedure. So, with the help of our amazing pediatrician, I started get referrals to the local Toronto Pediatric Neurosurgeons. I started getting evasive answers and rejections (the details of which are so politically charged that maybe I shouldn’t get into it). With the help of our ever supportive pediatrician, I expanded my search to the rest of Ontario. Again, rejection.
I have met with every Ontario Pediatric Neurosurgeon and have not been able to get anyone to write to OHIP. Not because the procedure will not benefit him in their opinion, but because in some way or another, their hands are tied, or because the procedure is not offered in Ontario, they are not familiar with it.
This led me to where I am now. With Stephanie’s help I have started fundraising. Our family and friends have donated. Others who have been so touched by Alesandro’s story have also given so selflessly.
I am overwhelmed with everyone’s kindness, selflessness and generosity. But there is still a long way to go…….
About the Operation: This Operation is performed at St Louis Children's Hospital in USA by Dr. T S Park. The operation is called Selective Dorsal Rhizotomy. Dr Park is the only surgeon in the world who goes into the spine removing a portion of one vertebrae, electronically stimulating the nerves to see exactly which ones are causing the spasticity (muscle tightness) which deform the bones as the child grows taller; he then cuts the specific nerves. This is a life changing surgery for kids like Alesandro because for a lot of them, this is the first time they will be pain free and free of the many future surgeries in store for them for their hips, knees, legs, and spinal scoliosis - all from the muscle tightness/spasticity caused by his type of Cerebral Palsy. For Alesandro, this will be life changing. Your support is invaluable to us.
Thank you for supporting Alesandro's Wish to Walk!
YOUR DONATION WILL MAKE A DIFFERENCE.
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