Mother continues fight for early detection of X-ALD
At a candlelight vigil held for Alex Oxford in Luling Friday, the family was astounded by the outpouring of love from people throughout the area who came to light a candle in memory of the once lively boy stricken by a rare genetic disorder called X-ALD.
They are called Alex’s Angels, a tireless group of people bringing their own light in the world who have been dedicated to helping the 12-year-old and his family deal with the devastating impact of an extremely rare, debilitating recessive genetic disorder called adrenoleukodystrophy or X-ALD.
By September of last year, the nonprofit organization, Chive Charities, became one of his angels by providing Alex with a $70,000 handicap van and Comfee seat that his mother, Carissa, considered a godsend.
Chive Charities Executive Director Brian Mercedes said they are deeply saddened by Alex’s passing.
“His story had such a profound impact on us that we knew we had to share it with the world,” Mercedes said. “Even though he is gone, his fight to educate the world about X-ALD lives on. Our hope is that the strength, energy and purpose with which he lived inspires millions to make a difference. Alex thrived as a team player and he’ll always have a captain’s spot on the Chive Charities team.”
Valerie Englade of Paradis said “this is not done” about their continuing efforts to raise awareness about the disorder and prevention.
Alex had been misdiagnosed with attention deficit hyperactive disorder (ADHD) until May 9, 2012 when he was diagnosed with X-ALD. He was 9 years old.
By last year, Carissa’s once athletic son weighed 83 pounds and his family was clinging to hopes such as his continued ability to swallow food and two bone marrow transplants that offered only temporary relief.
At first Alex’s parents, Carissa and Gene Oxford, were at a loss for what to do, but soon the community pitched in to help. Family members and friends set up Alex’s Angels, an organization that helped raise funds for Alex’s treatment.
As the disorder closed in on his brain, Carissa wept as she recounted the hard days of when Alex became wheelchair-bound and worsening seizures required frequent hospitalization.
But the Oxfords did not give up on their son.
When Carissa learned his condition could of been prevented by newborn screening, but she dedicated herself to raising awareness about the need for screening. She set out to get legislation passed to add X-ALD to newborn screening.
By November of 2013, nearly 100 people attended “Alex Gives Back Day” in Luling to listen to music, play in a bounce house and eat jambalaya. The event was a way for Alex’s family to give back to the community.
Services for Alex will be held Saturday (Jan. 30) at Holy Family Catholic Church in Luling. Visitation will be 9 a.m. to 9:45 a.m. with mass following at 10 a.m. Visitors are asked to wear purple in his memory.