A GoFundMe has been launched for a Santa Clarita child diagnosed with a rare genetic disease to help fund a clinical trial that hopes to improve his quality of life.

7-year-old Brooks has been diagnosed with Metachromatic Leukodystrophy (MLD) since the age of 2. 

“Brooks was a vibrant, happy, healthy baby who was crushing all of his milestones. When he was about 16 months old we noticed a slight change to his walking,” said Stacey Holbrook, Brooks’ mother.

After months of hospital visits and various tests, Holbrook received the devastating diagnosis and Brooks was given less than 5 years to live.

MLD is a rare hereditary disorder that causes fatty cells to build up in the brain, spine, and surrounding nerves. The build-up is caused by a deficiency in an enzyme that normally breaks down those fatty cells. As a result, the brain and nervous system progressively lose function. At this time, there is no known cure, according to the National Library of Medicine. 

In October 2018, Brooks underwent a bone marrow transplant using stem cells in an effort to save his brain. While the procedure bought Brooks some time, it ultimately was not a cure.

Dr. Maria Luisa Escolar, Brooks’ doctor, leads the Program for the Study of Neurodevelopment in Rare Disorders at the UPMC Children’s Hospital of Pittsburgh, and has studied gene therapy for MLD for over 25 years. Initial animal studies showed gene therapy stopping the progression of MLD and improving nerve function. 

“Having a child with such immense issues has taken a toll on our family and his three brothers,” said Holbrook. “Life revolves around medications three times a day, endless appointments, therapies, medical equipment, bills and the list goes on and on. This clinical trial would give all the families in our position hope.”

The GoFundMe has a $350,000 goal. For more information and to donate visit here.

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