By Patty Roy

Seven years ago, Tom and Stacey Wallace of Northbridge were thrilled to welcome a second son to their family. 

“Brooks was a vibrant, happy, healthy baby who was crushing all of his milestones,” Stacey Wallace said. Baby and toddler milestones are those developmental measurements of every new skill mastered, whihle parents check off each one. 

At 16 months old, Brooks was already a seasoned walker when his parents noticed a slight change to his gait. Their concern led them to a phalanx of doctors, a battery of medical tests and endless appointments.

“Six months later we were given the devastating diagnosis of metachromatic leukodystrophy,” Brooks’ mom said.

Metachromatic leukodystrophy (MLD) is a rare and progressive genetic disorder that affects the nervous system and causes severe neurological decline, often beginning in the toddler years. There is currently no cure for MLD, and existing treatments are few and not always effective.

The Wallaces were told by three different doctors from Boston Children’s Hospital, Massachusetts General Hospital and Connecticut Children’s Hospital that there was nothing they could do. 

“Brooks wouldn’t make it to his fifth birthday,” Stacey Wallace related the medical prognosis. “Devastated is an understatement at this point.”

As so many parents are forced to do when confronted with their child’s potentially fatal disease, Bob and Stacey dug into their own research to become Brooks’ best advocates.

They discovered that stem cell or bone marrow transplants were showing promise as a treatment for a few types of the leukodystrophy group of disorders.

“We did research and found a doctor in Pittsburgh who was willing to do a bone marrow transplant on Brooks,” Stacey Wallace said. “The transplant would save his brain and buy us time, but was not a cure.”

 In October 2018 the family was separated for four months while Brooks underwent a bone marrow transplant using stem cells.

“Fast forward five years and science has caught up with us,“ Stacey said. “Brooks’ physician, Dr. Maria Escolar, has been working on gene therapy for this disease for over 25 years. The science is here, but the funding for such a rare disease is not.”

Dr. Escolar began her research on rare neurodegenerative disorders in 2000, when she established the Program for the Study of Neurodevelopment in Rare Disorders (NDRD). Since then, she has published over 70 original research papers in peer-reviewed journals, including two influential publications in the New England Journal of Medicine. Dr. Escolar is a tenured Professor of Pediatrics and Neurodevelopmental Disabilities at the University of Pittsburgh.  She is close to a clinical trial for MLD, but there is a shortage of funding for rare disorders.

To help with research funding, Northbridge resident Rachel Rohde has organized a Go Fund Me for Gene Replacement Therapy for MLD. Visit it at: 

The funds raised will go directly to a clinical trial for gene therapy for MLD. 

Brooks is now seven years old and full of life, Stacey reports. He attends Northbridge Elementary School and loves being outside with his three brothers, Brady, Weston and Wyatt.

As Brooks gets older and bigger, it is more difficult to move him along with his therapeutic equipment around the house, Stacey said. But, for the moment, Brooks’ family is putting those concerns aside, and focusing hopefully on a better life for their son.

“We honestly thought that gene therapy would have been possible for him by now, but Covid and lack of funding has paused this treatment,” she said. “We are just trying to get the doctor the funds she needs to get this treatment going, then we will worry about our house and what the long term plans are.”