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New treatment provides hope for infant with rare disease
Eight-month-old Kylie Lane has a rare disorder, but a new, expensive medicine could make a world of difference. FOX 9's Maury Glover has the latest.
COON RAPIDS, Minn. (FOX 9) - As their 8-month-old daughter prepares for an expensive gene therapy treatment, a Coon Rapids family is bracing for three months of isolation that will put them under financial strain.
The gene therapy, which uses one of the world's most expensive drugs, could mean the difference between life and death.
Life-threatening genetic disease
The backstory:
Most new mothers worry about their newborn babies, but Alyssa Lane has reason to be concerned about the health of her 8-month-old daughter, Kylie.
"Overall it's been really scary and hard. It's been the hardest thing I've ever dealt with and not knowing how long she's going to be around or what her future looks like just turned our world upside down," said Lane.
Kylie was diagnosed with Spinal Muscular Atrophy, a rare genetic neuromuscular disease that can cause muscle weakness, when she was 4 days old. Lane says in the past, without treatment, children who have SMA only lived to 2 years old. But so far, the most noticeable impact on Kylie is her feeding tube, because the disease makes it difficult for her to swallow.
"It was the worst day of my life and I couldn't believe that was her reality. And that I was looking at the possibility of losing this angelic little thing that I just gave birth to," said Lane.
What's next:
Lane says Kylie is scheduled to receive treatment, which would replace the gene she is missing, but it costs $2 million. The gene therapy is covered by insurance, but the treatment would reset Kylie's immune system to zero, so the family would need to be isolated for three months afterward, leaving her husband, the family's sole breadwinner, unable to work.
"The treatment is covered but keeping her safe after the gene treatment so nothing gets in her body and kills that gene in the end and negatively affects getting the gene treatment," said Lane.
Lane started a GoFundMe to support her family financially for the expenses after the gene therapy. She explained the treatment will give Kylie a chance at a normal childhood, and she is grateful for the newborn screening test that she believes saved her daughter's life.
"I am so thankful for all of the opportunities but just so thankful she is going to be here with us," said Lane.