This is our dear 11-year-old son Nabil.
My name is Gregory and I'm fundraising for my 11-year old son Nabil. We have been fundraising for some time, but now we are in the position of urgently needing funds for a surgery that very likely will help him walk again and give him his life back. The surgery will cost $88,742 plus the days he spends in the hospital.
This moment marks the start of the 10 10 10,000 campaign. For the next 10 days (starting October 26) our goal is to try to find 10,000 people who will consider donating $10 to help my son get his life back.
We are asking everybody that sees this fundraiser to consider donating 10 EUR/USD/GPB and to share it with as many people as possible. You can help us get there. You can help my son leave his wheelchair behind and resume what is left of his childhood.
Nabil has been sick and has not been able to attend school since November 2021. Instead of playing with his friends and pursuing his interests (playing the piano and violin, soccer and attending chess coachings and tournaments) he sits in a wheelchair, unable to move his legs, unable to sit up unaided, and is tortured by constant headaches, sensitivity to sound and bodily pains. He is very underweight and has not attended school since November 2021. He needs help with everything from getting dressed to using the restroom.
After a long diagnostic journey, Nabil was finally diagnosed with tethered cord syndrome and hypermobile EDS. In essence, tethered cord is a disorder of the nervous system caused by tissue that attaches itself to the spinal cord and limits the movement of the spinal cord.
The only way to release the spine is through surgery. There will be many months of recovery and rehabilitation after the surgery where he will hopefully learn how to move his legs again. The doctors are clear that there are no promises and the success rate of the surgery does vary. They are also clear that he absolutely needs this surgery and he will only continue to get worse until he does. It is an exceedingly rare condition which is often misdiagnosed, especially in combination with EDS.
It is essential that Nabil be placed under the care of someone who has the necessary expertise and experience and who has seen cases with Nabil's symptoms. To our knowledge, only a handful of surgeons exist who specialize in tethered cord in combination with hypermobile EDS. Thankfully, we have found a wonderful surgeon at Brown University Hospital who has earned our complete trust. This surgeon is our best and probably only hope as things stand now.
The cost of the surgery is $88,742. On top of that there will be the costs for the hospital stay and the pre and post operation. Those depend on the success of the surgery and if any complications arise.
We are trying to raise funds to bring him to Brown, and additional funds help with the post-op rehabilitation. We can't and won't give up on Nabil. We desperately want to save our son but and time is running out. It is good to have this diagnosis but the battle is far from over. Many hard times continue to lie ahead.
We hope for nothing more than for Nabil to eventually recover and reclaim some independence. We wish for him to have the ability to play with his friends and pursue his interests instead of being confined in a wheelchair and completely dependent for all levels of activity/movement. We want him to have the freedom to move his legs, sit up unaided, speak and have a better quality of life that isn’t hindered by constant headaches, sensitivity to sound and bodily pains.
We implore you to do what you can to help Nabil. Even though the sum needed is overwhelming, please know that any amount you are able to give would be immensely appreciated.
Thank you from the bottom of our hearts.
Sandra and Gregory
