When Kyleigh Lydon was an infant, doctors diagnosed her with a rare disease called Galactosemia, which does not allow the 6-year-old to break down a simple sugar called galactose – a key component of milk and other dairy products.
That means every time Kyleigh needs medicine, her parents, Braintree police officers Sean and Kristine Lydon, must call one company after another, digging into the ingredients and talking to scientists to make sure that whatever is in the product does not contain a shred of lactose, which is half galactose.
Still, Kyleigh's own body produces galactose, and she must also be kept on a strict diet. "That’s the really scary thing about this," Sean Lydon said in a recent interview, shortly after a Cut-a-Thon on Sunday, Feb. 6 – one of many events the Lydon's have organized to raise money for research into Galactosemia since Kyleigh was diagnosed.
The hair-cutting fundraiser was held at RG's Hair Design on Pleasant Street in Weymouth and attracted many families who paid $20 each, with all the proceeds going through the Lydon's to assist the efforts of Dr. Gerard Berry, a world-renowned expert on Kyleigh's disease at Children's Hospital Boston.
“There’s really no money or research for the disease my daughter has," Sean Lydon said, adding that his other children, 5-year-old Samantha and 3-year-old Sean, said they want the medicine Berry is working on "to taste like bubblegum."
When the Lydon family learned about Kyleigh's disease, they also found out that little was being done to discover a cure or treatment because of its rarity and because another similar disease was being researched first.
Events they went on to organize for Kyleigh's Cure included a party at Florian Hall in Dorchester that drew 600 to 700 people for a live auction and raffle, Sean Lydon said. The family has raised about $200,000 for research, and most recently presented the Children's Hospital with a $93,000 check.
On June 12 of this year, a road race will be held, starting and ending at Emerald Hall in Braintree. It will feature 10K, 5K, youth and wheelchair divisions, and a post-race event with food, drinks and music by local band Java Jive.
More information and registration details can be found at www.kyleighscure.com.
Over the years, the Lydon's efforts have been supported by various businesses throughout Braintree and the South Shore and countless individuals, Sean Lydon said.
"There’s just no money out there, that’s why we’re out there every day," he said. "There’s no way we can do this on our own."
Galactosemia can cause liver and kidney failure or brain damage if galactose, acting as a poison, accumulates in the body, according to a description by the National Institutes of Health.
Each child has a unique chemical and genetic makeup, meaning that he or she can have widely different consequences accompany the disease, ranging from those above to lethargy, irritability and and poor weight gain.
“That’s why we are fighting so hard to find a treatment for this, because there are so many unknowns," Sean Lydon said. "Each kid is like a snowflake.”