Within the past month, a Hixson family has been hit not only with their 6-month-old daughter’s diagnosis of a rare genetic disease, but a flurry of recommendations for costly treatments and out-of-town doctor appointments they will struggle to afford.
Brynlee Thompson was diagnosed earlier this month with Hurler syndrome, a degenerative enzyme-deficiency disease in which the body cannot break down sugar molecules. The build-up progressively damages cells and organs, including the lungs and heart.
A stem-cell transplant and follow-up enzyme replacement therapies can help alleviate symptoms, but life expectancy for those with the disease is 10 years, according to the National MPS Society.
The single-income Thompson family will be forced to take off work for at least five months to travel with Brynlee to get her treatments in Cincinnati, said family friend Emily Holloway, of Signal Mountain.
“It’s a lot of extra travel, but it’s what’s best for Brynlee,” said Mrs. Holloway, who has organized a car wash and yard sale and started a fund at the Tennessee Valley Federal Credit Union to help the family make house and car payments and cover travel and medical expenses.