Our Friend Rob Pontes Round 1
Rob continues to work hard but is devastated by the condition that has slowed him down. Its heartbreaking to hear the kids ask why he can’t go outside and play in the yard with them.
We have committed to doing everything possible to treat Rob's condition, which often means trying new treatmeants. In doing so the Pontes familiy has accrued large medical bills, which have become a difficult financial burden to shoulder. Rob is an amazing guy to so many different people, so with the urging of his close friends we are looking to the community around us for some support. All donations will help support a great person find his way back to a normal life. Thanks for your time and support.
Friends and Family of Rob Pontes
Unfortunately, Rob's condition continues to worsen as he is slowly losing the use of his arms and hands. In January, Rob enrolled in a two week course at Spaulding Rehabilitation where he was taught new ways to work around his physical limitations and prolong his independence. In addition to that, we have had some pretty unique technological advances at the Pontes household. Rob now has a wheel chair accessible mini van, which came at a great time because we also upgraded his wheelchair to be fully motorized. Lastly, we had a lift put onto the outside deck to help assist Rob in getting in and out of the house with ease. Although his physical condition is slowly declining, he is still as neurologically sharp as he has ever been. The same witty and sarcastic Pontes is a pleasure to be around and is still considered the worlds greatest dad by Olivia and Avery.
Rob will continue to take his daily medication along with IVIG infusions once a week, so we are still hopeful that one of the meds will slow down his progression. Rob has been incredibly positive throughout this situation and has never wavered on hope. We know you are all pulling for us and the outpouring of love and support is what keeps us going so please, don't stop. We look forward to seeing you all this summer in Providence on July 24th!
Friends and Family of Rob Pontes
Brainstorm Cell Therapeutics is a biotechnology company working to develop stem cell therapies for neurodegenerative diseases like ALS. Stem cells are unique in their ability to self-renew and differentiate into many cell types. It is Brainstorms' belief that stem cells can differentiate into the types of cells that degenerate in ALS patients.
On November 17th, Rob will be going to Mass General where he will undergo an operation to extract bone marrow from each of his hip bones. Doctors will then take that to Dana Farber in Boston to grow the stem cells. Once the stem cells multiply, Rob will return to Mass General to receive the newly generated stem cells through his spine. Currently the tentative date for his second surgery is December 11th: he will not be undergoing anesthesia but will be kept a few days for evaluation. After Rob's second surgery we wait and hope for positive results; however, this is a blind trial and it is possible Rob will be one of the patients to receive a placebo. Please keep us in your thoughts and pray with us that Rob does not receive the placebo!
For more info check out: Brainstorm-cell.com
Thank you so much!!!
All the friends behind #RollwithRob
I have seen Roll With Rob t-shirts everywhere, and I've always meant to find out what it was. A friend shared this on her FB page...this is so heartbreaking. Millions of deadbeat dads in this country...and this happens to a father any kid would be lucky to have. I hurt for you all, and as soon as we have any money to spare we will definitely contribute. Wish I could do it today. We will also go to the Providence event. Lots of love to you guys.