Coronado’s Nic Brown at home in his power wheelchair
Sometimes in life all you have to do ask. That is what CHS student Nicolas Brown and his mother, Katherine Ball, did just before Christmas. They asked for money to buy Nic, who is living with X-linked myotubular myopathy (XLMTM), a handicapped-converted van on GoFundMe.com.
XLMTM is a rare genetic muscle disease that affects skeletal muscles. He can’t walk, has limited use of his arms and has difficulty breathing. He gets around in a motorized wheelchair with a ventilator attached.
Nic also has frequent medical appointments, which includes regular trips to Rady Children’s Hospital. Two years ago, his family’s wheelchair accessible van broke down. Given the high cost of the special vehicles required to transport a wheelchair-bound patient, Ball, a single mom, was not able to replace it. So for two years, Nic and his mother have had to rely on public transportation.
Taking the shuttle to and from Rady Children’s Hospital for a one-hour appointment can take up to six hours, Ball said. There are always other passengers who have to be picked up and taken home.
So, with few options, Nic posted a fundraising campaign on GoFundMe.com. The response was amazing. Nic received pledges ranging from five dollars to thousands of dollars and have raised just over $33,000 so far.
Initially, Nic’s goal was to raise enough money to buy a van, but thanks to the generosity of so many donors, the family is hoping they will be able to raise enough to purchase a Sprinter Van. “People have told me that it’s the best for Nic’s condition,” said Ball.
Due to Nic’s medical requirments, it’s not always just a simple matter of getting Nic and his wheelchair in and out of the car. With the hook that lifts him in and out of his chair, the nebulizer, the ventilator, backup battery and special bed, Nic’s room is a virtual intensive care unit (ICU).
When he travels long distances, he has to take the ICU with him. Standard handicapped-accessible vans are not designed for this; Sprinter vans, which start at approximately $36,000, can be designed to accommodate these requirements.
Some of the equipment Nic needs every day to survive
Along with the donations for Nic, Ball says they received messages and cards from people sharing their stories and offering their support. “It restored my faith in humanity. You know other people share your story, share your pain, share your love, and you know that you are not alone,” she said.
Nic has felt the love as well. “He has a lot more friends at school now,” Ball said. Kids are stopping by or inviting him over to play video games. A local church invited him to join their youth group. “I haven’t seen him this happy in a very longtime,” she added.
Before the GoFundMe appeal and a story in San Diego’s Union-Tribune, few in the community knew Nic’s story. They just saw a frail boy in a wheelchair with a portable ventilator and an oxygen tank.
“It’s kind of hard for people to look at him and see a human being,” his mother said. “People will sometimes talk to him like he’s deaf or mentally challenged. He gets very frustrated with that.”
In actuality, Nic is a solid B student at Coronado High School who loves watching sports and playing video games.
However, although Nic is in many ways he is a regular kid, “Nic has spent most of his life in hospitals,” Ball said. In 2005, he contacted pneumonia and spent 16 months in the hospital. And as a result of that illness, Nic’s mother decided to move the family from Atlanta, where Nic was born, to Coronado. A cousin who lived here sent Ball an article about Coronado resident Steve Wampler, who’s been able to lead a normal life in Coronado despite being confined to a wheelchair because of cerebral palsy. “His story was so inspirational that we decided to move,” Ball said.
Nic has thrived here. He is now the second oldest person in the country with XLMTM.
Last year, he learned about a new therapy that may transform his life. People with XKMTM “lack the enzyme needed to contract muscles,” said Barbara H. Wuebbels, vice-president of Audentes Therapeutics in San Francisco. The company has developed a system that transports healthy myotubularin genes in to the body that “could potentially improve muscle function,” Wuebbels said. Early animal models have shown great promise. Audentes hopes to begin patient trials later this year.
If the family is able to raise enough money to purchase the van, Ball wants to take Nic to a Myotubular Myopathy convention in Chicago this summer. It would not only be a great opportunity to meet with other families in similar circumstances, it would allow them to see old friends along the way, and a chance to see a good chuck of the country.
Nic has seen so little of the world. There is so much he has never experienced. This winter he saw a butterfly for the first time. Up to then he thought they were a myth, like unicorns.
Besides the travel opportunities, the van will give Nic more control over his life. The new van will have hand controls that will allow Nic to open the door and operate the car radio by himself. “It make him feel that he is part of things and can help out,” his mother said. “This is huge.”
If you would like to contribute to Nic’s GoFundMe campaign, click here.
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Gloria Tierney
Staff Writer
eCoronado.com
