'Women in the City of Good Neighbors' sheds light on Duchenne muscular dystrophy
Suneel Ram, 22, is near death. For 20 years, the Canisius College junior has been living with Duchenne muscular dystrophy. You may not have heard of Duchenne, but the genetic mutation is always fatal and usually takes young men by their mid-20s. That is what drives a sense of urgency behind a new local project aimed at finding a cure.
"You don't want that for your child. Every mother wants their child to live and enjoy life and be able to do things, but to watch my bright, beautiful baby lose function is very hard."
Dr. Neera Gulati told WBFO that her son Suneel was diagnosed with Duchenne at age 2 1/2. It was then the mother and full-time primary care physician also became a full-time caregiver.
"Currently, Suneel needs assistance with all activities of daily living," she said. "He's in a power chair most of the time. He's bright, he's funny, he's articulate and he wants to be included with everyone else. That's extremely important to Suneel."
Duchenne prevents a body from making the protein dystrophin, which muscles need to work properly. The older a boy with Duchenne gets, the more his body function deteriorates.
"The hardest part of the disease is, not only do you lose your ability to move, you lose friends, you lose family, you lose loved ones," said Gulati. "So in addition to not being able to do the things he wants to do himself with his muscles, it's the isolation he feels from others."
Suneel is one of a dozen boys in Western New York and 50,000 worldwide living with Duchenne. The numbers may seem relatively small, but the disorder is the most common and severe form of muscular dystrophy. In 2002, Gulati started her own non-profit foundation, called Suneel's Light, to raise money for research toward a cure.
Board Member Anita Ballow said many people see a wheelchair before they see the person in the chair.
"What I see is, sometimes when you're in a wheelchair, that sort of scares people off. I think they're not as open, they're afraid," Ballow said. "It's very hard to approach and know the right thing or what the right words are. People don't treat him like everybody else and I think that's the first thing you have to think of: How would I want to be treated?"
"It's a complicated disease because it has all these different mutations," said Gulati. "The medicine that can help Suneel is currrently being reviewed by the FDA, but the hard part is because Suneel's 22, this drug is gonna reach the younger boys who have time, but not reach our older kids."
Suneel's Light and similar foundations are advocating that all newborns be screened for neuromuscular disorders. Gulati traveled around the world, trying to gain this kind of knowledge and, in the process, met many Moms who she said are selflessly devoting their lives to a cure. That sparked an idea.
"We have so many amazing women in Buffalo, NY who also are fighting for a purpose with passion and many unsung heroes that I felt it important that we highlight their efforts and showcase what these women are doing," said Gulati, "because they're working tirelessly every day to make our city a better place."
"It's kind of like Suneel's Light, where we're trying to raise funds to go for a cure, hopefully" said Ballow, "and there's so many women in this community that are in the same position, where they have a passion or there's something that they're working for and they're not getting appreciated, nobody's paying them or they're not being seen and they're doing this because of, you know, what's in their heart."
The result was the creation of a new book bringing these women to light. Award-winning filmmaker and author Jackie Albarella photographed and wrote about 42 of these women for the locally published Women in the City of Good Neighbors. For example:
"Shannon Filbert is a young woman, she was in an accident, she's in a wheelchair, but she has this wonderful smile, she exudes this happiness and she is a lawyer and judge," said Ballow. "It's just amazing the things that she's doing, not letting her disability get in the way. She has a spark that you hope people see and appreciate first before they see anything else about her."
All proceeds from the sale of the book go to the foundation. It begins with a poem by Suneel, which in part reads:
"I hope we remember the people that are hurting,
and their concealed effort to put behind the scars.
I hope they don't remember when someone hurt them,
I hope they remember when someone helped them.
I hope they don't remember the rejections,
I hope they remember the excitement of being accepted.
I hope they don't remember my intoxicated ramblings,
but that they remember my polished writings.
I hope they don't remember my mistakes and wrongdoings,
but that they remember my actions of love.
I hope they don't remember me for the tears and sorrows,
instead for the smiles and adventures.
I hope they don't remember me for who I have been or who I am not,
but instead for who I am and who I will be."