Popular entertainment website inspires online community to donate $70K van to Luling boy battling rare disease
A $70,000 handicap van and Comfee seat recently donated by Chive Charities came as enormous relief to Carissa Oxford of Luling, who is determined to stay the course on helping her son, Alex, deal with a rare debilitating disease.
The van, coming in September, has become vitally important in helping Alex’s family to keep this 83-pound boy mobile, as well as to make it possible for him to return to school up to three days a week.
The 12-year-old’s condition had worsened to where he can’t control his head movement enough to safely ride on the school bus anymore.
“I’m kind of lucky this is considered rare because I was able to get this assistance,” Oxford said of her son’s rare disease called adrenoleukodystrophy (X-ALD). “It’s a huge deal.”
Chive Charities is a nonprofit organization that inspires the online community “to champion orphaned causes” in need of public awareness and financial assistance. The nonprofit organization’s nationally recognized flash charity campaigns and “Chivers” have raised more than $3.3 million in grants, as well as $1.8 million in flash campaigns.
“Alex suffers from an extremely rare, debilitating recessive genetic disorder,” said Brian Mercedes, Chive’s executive director. “He embodies the underdog, which is the heart of who Chive Charities is committed to serving.
While Chive Charities has provided the Oxford family with extremely important mobility and therapeutic items, Alex is the one having a bigger impact on those around him.”
X-ALD is so aggressive that his family had to watch him deteriorate quickly and traumatically.
“My son has zero quality of life,” Oxford said. “We went from captain of his football team to this in six months. If there was a sport out there, he played it and he was intelligent.”
Oxford recalled the hardest day of her life on Oct. 31, 2012.
“The first day I put a diaper back on my eight-year-old child was the worse day of my life,” she said of them all dealing with X-ALD closing in on Alex’s brain. “It was the day my son lost his sight and started screaming that everything went dark. That was the day he became wheel-chair bound.”
Two bone marrow transplants done three years ago in Minnesota – home to many of the world’s X-ALD experts – gave them hope.
“We fought really hard,” Oxford said of making any headway with Alex’s condition. “He’s one of the few boys in this condition that can still swallow food, and he’s the healthiest X-ALD boy they’ve ever seen in Minnesota.”
But she’s worried this advantage may be giving to much harsher realities about her son’s condition.
Alex’s seizures are becoming more frequent and intense, requiring heavier medication and sometimes hospitalization. He is losing muscular abilities to the point of being unable to talk and possibly even being able to swallow, which are indicators the disease is again progressing.
“If I crawl in the corner and give up, I’m not helping anybody,” said Oxford, who has devoted her life to finding purpose in Alex’s situation. “It left me a purpose and that is to make sure everyone I come in contact with knows about X-ALD … because I would have given anything to have known about X-ALD. This is horrendous. No parent should have to go through what we’ve gone through.”
It’s why Oxford has taken on the cause as an advocate for her son, as well as other boys diagnosed with the disease, who was misdiagnosed and lost precious time getting proper treatment that might have given her son a normal life.
In Alex’s case, they were told he had attention deficit hyperactive disorder in first grade when symptoms appeared.
It wasn’t until May 9, 2012 he was diagnosed with X-ALD.She wants to raise awareness about the need for newborn screening, which Oxford said would have identified her son’s condition early enough to get the bone marrow transplant early enough for a possible normal life. She’s going to meet with state Sen. Gary Smith, District 19, on introducing legislation to add X-ALD to newborn screening.
“If we’d known about the newborn screening he’d have a life,” she said of her son.
So soon after celebrating Alex’s 12th birthday with a purple cake (his favorite color), Oxford is focusing on informing others to spare them Alex’s struggle.
Oxford said talks have started on starting a U.S. chapter of the U.K.-based Stop X-ALD Foundation.
The St. Charles Parish Council declared September “X-ALD Awareness month.” She wants to inform schools and designate Fridays as blue jean days during the month.
“I want to know my voice is being heard and that my job is getting done – that I’m making a difference.”
Oxford should take some comfort from how she’s affected Chive Charities.
“We hope his story will inspire millions and create awareness for a disorder that could use a megaphone to be heard,” said Brian Mercedes. “If we can help prevent just one misdiagnosis or allow for more frequent early diagnosis, Alex will have made a lasting impact.”
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