DEDHAM — The parents of a three-year-old boy who died following a courageous battle with a rare, genetic disease are inviting supporters to attend the services for their son.
Purnell Sabky was born with Niemann-Pick Type A, which some call “Baby Alzheimer’s,” because, along with the complications to the body, the neurodegenerative disease also causes children to become more distant, making smiles and laughs more infrequent.
Purnell, whose family affectionately called him, “Nell,” was with his family when his heart beat for the last time on Saturday.
“The gift he left us was, we had an amazing holiday,” Nell’s father, Sam, told Boston 25 News Thursday from their Dedham home. All of our family was here. He was comfy, he was alert, he was smiling. And then, I think he just decided it was time."
When Nell was just 1 year old, his parents and supporters launched a massive fundraising effort for a gene therapy they hoped would cure him.
The campaign quickly reached $750,000, and Nell began treatment at a pace which the medical and research field rarely experience. Nell was the first child to receive treatment for his disease.
“It was overwhelmingly beautiful how many people wanted to help,” said Nell’s mother, Taylor, stressing their gratitude toward donors. “And Nell was so special that he gave us a way, gave people a way of helping.”
While the first treatment wasn’t successful, the second, the Sabkys believe, gave them more precious time with their son.
“We got almost two more years out of that (good) quality of life for Nell, where up until the very end, we have laughing videos,” Sam said.
The Sabkys are confident the donation of Nell’s organs and the information gathered from testing him every three months throughout nearly two years of treatments will help researchers develop a cure. A third treatment is currently in development.
“Treatment is in the works, hopefully soon being available for other children,” Sam said. “Just thinking about kids getting it earlier and maybe preventing the neurological decline earlier and having a much more interactive and happier, smiley boy or girl for longer, it warms our hearts. And Nell was a big part of that.”
While the Sabkys grieve, they are finding joy in their baby girl, Hayley, who will soon turn one. She was conceived by invitro fertilization and genetic testing to ensure she does not have her big brother's disease.
"She, to be honest, has been the most beautiful gift for us. She has been the perfect sister to Nell," Taylor said. "She helped us through some times, shining light in any room when we were receiving dark news."
Hayley will grow up knowing the legacy of her brother.
"We're sad, but we have a lot to take comfort in with the life that Nell lived," Sam said.
"Someone wrote something really beautiful on his guest book for his obituary," Taylor added, "that he was always happy and smiling even when he wasn’t aware he shouldn’t be happy and smiling."
Nell’s wake will be held Friday at the P.E. Murray - F.J. Higgins, George F. Doherty & Sons Funeral Home in West Roxbury from 4-8 p.m.
His funeral mass will be held at Holy Name Church, 1689 Centre St., West Roxbury, MA on Saturday, Jan. 4 at 1:30 p.m.
The family asks in lieu of flowers that supporters donate to Wylder Nation Foundation online at https://wyldernation.org/donate/ or by mail at Wylder Nation Foundation, 8924 E Pinnacle Peak Road, Ste. G5-574, Scottsdale, AZ 85255.
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