Nicole Aldrian was diagnosed with breast cancer in November 2012 and is had a bilateral mastectomy yesterday, but instead of worrying about her upcoming surgery, the Murrieta mom is concerned about not being able to care for her four year-old son Trevor while she is in the hospital.
“The anxiety I’m having right now is not so much the surgery. I’m more worried about making sure that Trevor is taken care of,” Aldrian said. “Trevor is my priority. I’m not scared. I have a dying child.”
Trevor was diagnosed with Krabbe, a rare neurological disease when he was six months old. Having lost all motor control, Trevor is unable to sit, walk or talk and has 24-hour at-home care.
“He’s slowly declining,” Aldrian said. “Even with the best of therapy, he’ll never get better.”
Trevor and his fraternal twin brother, Tyler, were born on November 5, 2008. Despite being born a month early, both babies were believed to be healthy at five and a half and five pounds, respectively.
“Trevor was bigger. He ate more initially; he was more alert,” Aldrian said. “He was born very healthy, not knowing that he was carrying this disease and was affected. It basically started in utero.”
Soon after he was born, Trevor began to have trouble eating and was treated for acid reflux. But his inability to keep food down and his irritability continued to get worse. He would scream whenever he saw his bottle, Aldrian said.
After a series of tests at Rady Children’s Hospital-San Diego, Trevor was diagnosed with Krabbe disease, which is caused by the deficiency of an enzyme that grows and maintains myelin, the protective covering around nerves. The genetic disease affects about one in 100,000 in the United States, according to the National Library of Medicine.
“We never dreamed of this diagnosis,” said Aldrian, who added Trevor cried in pain 15 hours a day. “They told us there was no cure.”
But Trevor’s suffering could have been prevented. Although infantile Krabbe disease is generally fatal before age two, umbilical cord blood stem cell transplantation from unrelated donors has proved as a promising treatment. Because treatment outcomes are poor for symptomatic patients, however, it is critical that the disease be detected early.
California currently doesn’t screen for Krabbe in newborns. It would cost an estimated $1 per child to add the disease to the newborn screening test, Aldrian said. When Trevor was born, only New York screened for Krabbe. Missouri now also screens for the disease, and Illinois, New Jersey and New Mexico have also passed laws to screen for Krabbe.
“If Trevor was born in New York, he could have had this stem cell transplant that basically stops the disease in its tracks,” Aldrian said.
Aldrian and her husband, Steve Aldrian, have advocated for newborn screening of Krabbe disease through their nonprofit organization, the Peace, Love & Trevor Foundation, which was launched in December 2010.
In 2012, California Senate Bill 1072, which would have amended California’s current newborn screening laws to include Krabbe disease and Hurler syndrome, passed the Senate Health Committee but stalled in the Senate Appropriations Committee. In April, a new bill passed the Senate Health Committee. CA SB 224 would also expand newborn screening to include Krabbe disease and Hurler syndrome.
Although the Peace, Love & Trevor Foundation advocates for universal screening, the organization’s primary mission is to raise funds to support other Krabbe families. Since its founding, the organization has raised nearly $20,000 to purchase equipment and supplies for families with children inflicted by Krabbe. Aldrian said her family has been fortunate to have good health insurance through her husband’s employer, but other families are far less fortunate.
“We felt we were ahead of the game with everything, but we were meeting these other families that either didn’t have private insurance or they couldn’t get the equipment or supplies they needed, and that’s why we started the Peace, Love & Trevor Foundation,” she said.
The foundation also helps connect Krabbe families with Dr. Maria Escolar, a leading Krabbe specialist and Trevor’s doctor. Escolar and her team at the Children’s Hospital of Pittsburgh of UPMC perform clinical research and provide ongoing services for more than 500 patients with rare metabolic disorders from across the country. The Aldrian family visits Escolar every year so she can evaluate Trevor and Tyler.
“We know it’s not going to save Trevor, but it could help future children,” Aldrian said.
“She’s really helped us to understand and manage the disease. What we’re doing is making him comfortable until that awful day comes when he stops breathing.”
In the last year, Aldrian has cared for her sons, headed the foundation, returned to work part-time and has had several rounds of chemotherapy. Trevor is her inspiration to fight.
“As long as my son is continuing to breathe and fight, then I’m going to do that,” Aldrian said. “It would be so easy for me to fall into a deep depression. I have a dying child and now I have breast cancer. But I always look at the glass half full.”
To learn more about the Peace, Love & Trevor Foundation and how you can help, visit its webpage.
Read more at Patch.com. Written by Kristina Houck.
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