Please help Nabil walk again

Goal:

 USD $100,000

Raised:

 USD $26,637

Campaign created by Gregory Maytan

Campaign funds will be received by Gregory Maytan

Please help Nabil walk again

https://youtu.be/JsKXjCtJEqo

Dear Friends,

We’re coming to you now because we’re faced with a situation no parent wants to experience with their child. Our 12-year-old son, Nabil is battling a rare and serious health condition – hypermobile EDS and tethered cord syndrome - and we’re sharing his story and asking for your help. As you can see in the video, he’s at the center of our lives and like all parents, we just want him to have the best quality of life possible.

Nabil has been sick and unable to attend school since November 2021. Instead of playing with his friends and being a normal boy, he sits in a wheelchair, dependent on help to perform some of the most basic functions of life.

In December 2023, he underwent successful surgery to address this condition, but his path to recovery has been strenuous. Despite initial intense pain, Nabil has shown progress—his voice has returned, and he is gaining strength through daily therapy sessions. The surgeon was clear that his ability to someday walk again would depend on the therapy.

Nabil still has an excruciatingly long and difficult road ahead of him. We are asking you to consider supporting us with the many costs that long-term rehabilitation entails. Insurance coverage is limited, especially when dealing with a rare and poorly understood disease.

Funds received will be used to pay for a more intense rehabilitation in Slovakia which we believe would be of more benefit for him at this stage. Anything left over will be used for medicine, supplements and therapies, for nutrition and to support one of his parents always being by his side.

We invite you to join us in supporting Nabil on his journey to recovery. Any assistance will make a significant difference in his life. There is nothing we want more than to see him walk again.

For those residing in Europe, we also have a page on GoFundMe in EUR for convenience.


Thank you sincerely for your consideration and support.


Warm regards,


Sandra and Gregory


Recent Donations
Show:
Kelsey
$ 50.00 USD
22 days ago

Mike Mensing
$ 10.00 USD
27 days ago

Anonymous Giver
$ 50.00 USD
1 month ago

good luck to you all, eileen

Anonymous Giver
$ 10.00 USD
1 month ago

Anonymous Giver
$ 30.00 USD
1 month ago

Thank you for the beautiful benefit concert

Deena V Romoff
$ 20.00 USD
1 month ago

Anonymous Giver
$ 20.00 USD
1 month ago

Anonymous Giver
$ 100.00 USD
1 month ago

Nabil, I can’t get you off my mind and heart since I read your story. I am sending love and prayers to you across the ocean. God bless you and your family. God bless your father using his musical gifts to help his son. Joan

Greekgal
$ 100.00 USD
1 month ago

Prayers for health wealth and love

Christopher French
$ 100.00 USD
1 month ago

Dr Terry Morris
$ 100.00 USD
1 month ago

So lovely to meet you. Praying for your son’s full recovery.

Anonymous Giver
$ 25.00 USD
1 month ago

Anonymous Giver
$ 200.00 USD
1 month ago

I will pray for Nabil’s recovery. CRS

Anonymous Giver
$ 100.00 USD
1 month ago

Anonymous Giver
$ 50.00 USD
1 month ago

Katrina Savitski
$ 50.00 USD
1 month ago

Praying for your family and Nabil's continued progress. -friend of Jeff Butler

Diana Fraser
$ 100.00 USD
1 month ago

Anonymous Giver
$ 26.00 USD
1 month ago

Anonymous Giver
$ 50.00 USD
1 month ago

Anonymous Giver
$ 25.00 USD
1 month ago

From one parent to another

Updates

Update #21

November 16th, 2024

This month Nabil starts his fourth year of being sick. It feels like quite a grim milestone. We continue to do what we can and would never have gotten as far as we have without your help. If you are able to continue supporting him we would be immensely grateful. We will continue to follow the disease wherever it leads and do whatever it takes. Thank you all so much once again. 

Update #20

October 11th, 2024

I'm sorry for not having updated in quite a while. Although Nabil is still making progress, it seems that the road to recovery will be longer and more grueling than we had hoped. Thankfully we have one of the best physical therapists there are working with him regularly. His passion for physics is as strong as ever, and learning remains the biggest source of joy and inspiration for him. Thank you for all of your amazing support and thank you also for considering to continue to support my dear son. Every donation makes a big difference for which we are immensely grateful. 

Update #19

August 12th, 2024

Dear all, just a brief update. The great actor Justin Baldoni made a updated 3-minute video of Nabil that I have posted in the slightly revised text. Nabil is continuing to recover and we feel that he would benefit from more intense physical therapy. We are therefore trying to raise additional funds to bring him to an excellent program not too far away where he would stay for 2-4 weeks and have much more rigorous therapy.

Unfortunately, this is not a disease where he can watch Netflix all day, take some medicine and hope for the best. All progress is dependent on the physical therapy he gets and participates in. He has to work like a lion for every tiny bit of mobility and strength. It is truly a grueling process. We are so immensely proud of him for what he has accomplished so far. 

Thank you once again to all of you for your great support. Nabil could not have come this far without you. 

Update #18

July 24th, 2024

I just wanted to reach out and thank you all again so much for all you have done for my dear son. A new video about him was just made by Justin Baldoni and his team that contain some updates. Please do watch if you have three minutes:

https://youtu.be/JsKXjCtJEqo

Update #17

July 13th, 2024

It is a difficult time with so much in the air. However, Nabil is continuing to make progress thanks to your donations and is taking much refuge in his learning. Here is a photo of him explaining a derivation of the Klein-Gordon equation (a part of the online graduate MIT class he is taking). Thank you once again so much for supporting my dear son! 

Update Update #17 Image
Update #16

July 4th, 2024

It was today, exactly one year ago, that the neurosurgeon at Brown University took a look at my son's scans and finally gave him the correct diagnosis. Before July 4, 2023, we still were in the dark as to what was going on.  

All the progress made by Nabil would not have been possible without this doctor and her surgery. We will forever be immensely grateful for this great surgeon and human being. We will also forever be grateful to all of you who helped me get my son to her. 

Update #15

June 28th, 2024

Well, bad news. The health insurance just informed us they will stop paying for Nabil's rehab in a couple of weeks. Not stress that we needed now. He has made such good progress here, but he needs to be able to continue. Suddenly taking him out of where he is at would not be good for him while he is in the middle of such a delicate process. The process needs to continue. 

Anything you would be able to do to continue to share this campaign would be so appreciated. 

Thank you so much,

Gregory

Update #14

June 9th, 2024

Nabil has now been at the rehab center/hospital for slightly over five months. He is improving, but it is such a slow and long process. The doctors and therapists all say that his recovery will take a lot more time.  He has not been home since November of 2023. Almost three years of his childhood have been spent in hospitals and clinics instead of playing with friends and attending school. 

I'm quite tired as well. 

He continues to study math and physics as usual.

Thank you all so much for your support and for considering supporting him in the future. 

Update #13

May 8th, 2024

I've finally updated the fundraising text to reflect the surgery having been completed and the long-term rehabilitation that is now underway. I just wanted to thank all of you once again so much for all you have done to help my son recover after what is now almost three years of illness. 

Update #12

April 3rd, 2024

Just a short update. I'm just loving hearing Nabil's voice. He always speaks with a full voice, and sings and whistles almost all the time. Quite a difference from almost two years of almost only faint whispers! All of you made this possible, and for that I will forever be grateful. Thank you!

At the same time, the nerve signals from the brain to the legs seems to be completely gone. We have gotten some ideas for supplements we can try. I'm continuing to look for any studies or trials he could participate in.  

He continues to occupy his time with studying math and physics at a University level. Learning is really keeping up his spirits. 

I'm pasting a photo from his birthday celebration. A therapy dog came to greet him wearing a 'Happy 12th Birthday Nabil'.

Thank you once again so very, very much for your kind support and generosity!



Update Update #12 Image
Update #11

March 23rd, 2024

We just got some difficult news about our dear son. A different kind of nerve test that had previously not been done showed the signals from Nabil's legs to the lower spinal cord are normal, but are not fully transmitted to the upper spine, only very weak and slow. The doctor suspects that the damage to the nerves was caused by the tethered nerves that got torn/damaged during growth spurts long before surgery. These findings explain why he has still not been able to move his legs 3.5 months after the operation (though his quality of life has already greatly improved). 

We are told that the ultimate outcome of his current rehabilitation is uncertain. The doctor will do his own research on new developments and breakthroughs in neuroregeneration and very much encouraged us to do the same. There is no doubt that his hypermobile EDS has been at the core of the tethering and is making rehabilitation so much more difficult.) 


We are therefore hoping that you might once again consider sharing this fundraiser in the hope that it will reach the right person. Anything else you would be willing to do would be immensely appreciated. Your help could be invaluable in helping us find and afford future treatments he might need to someday walk again. We thank you from the bottom of our hearts! 

Update #10

March 13th, 2024

I'm so pleased to be able to announce that Nabil's voice is completely back! Just today his therapist tole him that he is no longer in need of any speech therapy. This would not have been possible without your generous donations. 

We are trying to learn more about hypermobile EDS as well as a related condition called CCI (cervical cranial instability) and what might be able to be of the most help going forward. Swimming continues to be beneficial for Nabil but no movement in the legs as of yet. Sitting for long periods in the wheelchair also remains a problem. We are still looking at a very long time for healing and recovery.

 Thank you all once again so much for your kind and generous support. It means the world to me. 

Update #9

February 21st, 2024

Dear all, Nabil has spent a couple of weeks at rehab so far. It's a good rehab surrounded by nice nature, and he has been able to spend some time in the swimming pool. He is slowly getting used to sitting in his wheelchair more and more, even if it still causes him pain (post-surgical pain). Because of the operation we are able to hear his regular voice almost all the time and his horrible sound sensitivity (which did not allow him to go outside) is almost gone. However, it still looks like it will be a while until the nerves are repaired and restored enough to allow for leg movement. He is studying a lot of math and physics; acquiring knowledge gives him a lot of joy. It will be a very long process. 

Thank you all so much once again for your amazing support and generosity! 

Update #8

February 2nd, 2024

I'm so sorry for the delay in updating. Nabil is still recovering from the surgery and will need intensive rehab for about a year. I can also share that the tethered cord surgery was absolutely necessary but that other diagnosis were made that relate to the tethered cord. Nabil was diagnosed with EDS (Ehlers-Danlos Syndrome), a genetic disease which explains his hypermobility. More importantly, he was also diagnosed with CCI (cervical cranial instability). We are hopeful that the tethered cord surgery will result in more improvements during the upcoming months but unfortunately he will also need a surgery for his CCI pretty soon. Poor boy. It is still a very long road ahead and hopefully God will give us the endurance we will need. All donations will still be very much appreciated as we move forward with therapies and treatments. Thank you all once again for your great generosity and please accept my best wishes for a happy 2024. 
Update #7

December 16th, 2023

My dear son had surgery 10 days ago and has been slowly recovering. The surgery was a success and 100% confirmed the diagnosis and the urgency. However he can still only lie on his back and has a lot of pain. He is getting daily physical therapy and is able to make small improvements every day. It will be a very long and difficult process, his surgeon has talked about a year of intense physical therapy, preferably inpatient. If we manage that chances are that he will be able to walk again. Thank you all once more for all of your kind donations, thoughts and prayers. 

News

December 4th, 2023

The day is finally here. Nabil will have the surgery tomorrow with Dr. Klinge at Hasbro Children's Hospital. There is no better doctor on the planet for this type of surgery.  If you are religious, I ask you to please pray for my son tomorrow.  Please pray that the surgery will make it possible for my son to someday walk again and have a normal life and that these awful two years of debilitating illness will start coming to an end.

It has been over two years since he was physically able to attend school. He is turning 12 in a little over one week. 

Thank you again so much for all your generous contributions towards this surgery and the upcoming recovery. I really can't thank all of you enough. 

Update #5

November 17th, 2023

Dear all, I just wanted to say a huge thank you to all of you who have donated towards my sons medical care so far. I know that the goal still might seem far away. That does not take away for how deeply and profoundly grateful I feel to all of you who have so generously donated so that my son someday might be able to move his legs and walk again. I thank all of you from the bottom of my heart. 


Update #4

October 26th, 2023

Dear all, we are now launching the 10 10 10,000 campaign along with a beautiful video about Nabil made by Justin Baldoni and his team. During the next 10 days we are looking for 10,000 people to donate 10 dollars towards Nabil's treatment because of his upcoming surgery. 

https://youtu.be/uwIVYMuNeH4

Update #3

October 22nd, 2023

Dear all, first of all, thank you all so much for your very generous and helpful donations. It is truly heartwarming that so many are willing to sacrifice so much to help my son. I'm sending out a video which a friend made for us, a video which tells Nabil's story through the eyes of his father with pictures of Nabil from before he got sick as well as after. I also wanted to say that we are now scheduled to have the surgery done towards the end of November. If you are OK sharing this fundraiser, please feel free to do so as we try to gradually reach our goal. Please remember that no amount is too small! 10,000 donations of $10 each would, in addition to what has already been donated, cover the trip, the surgery and the complete hospital stay. Thank you all so much!

https://youtu.be/JhG_byKrjtI

Update #2

August 28th, 2023

I have just updated the fundraising text in light of new information. Nabil has been diagnosed with a tethered cord and will need surgery to correct it. The costs are staggering, but any little bit really helps. This boy has suffered for almost two years in ways most adults never do. The road ahead is still thorny and difficult.Thank you for your kind help and for continuing to share this fundraiser.

Update #1

July 3rd, 2023

Please let me please thank you from the bottom of my heart for the donation you have made to help my son. Nabil is gaining a little weight and eating a lager variety of foods which is the good news. We no longer believe he is in any immediate danger even if he still can't walk, talk, sit up alone and still suffers from the most horrendous and constant headaches. Even though many things point to this being a vaccine injury, we notice that we need a more exact diagnosis of what exactly is going on in Nabil's body to be able to really help him. 

 Nabil recently told me that the hardest thing about being sick for him is that he is unable to help or do anything for other people. He burns with a desire to do good in the world. Almost two years of his childhood have been cruelly taken away from him. We do feel that time is really running out if he is still to have the chance of making a full recovery. If you have the possibility to continue helping him or to share this fundraiser please know we would be most grateful. Thank you so much and God Bless. 

Prayer Requests

Click the Pray button to let the campaign owner know you are praying for them.

Campaigns Near Me