BOSTON (CBS) – Imagine if your child had a potentially deadly disease that had no treatment or cure? One Braintree family is now on a mission to find a cure for the disease…and save their little girl. That meant raising money and finding the right doctor.
Kristine and Sean Lydon were overcome with emotion as they honored the Children’s Hospital researcher who’s trying to find a cure for their six year old daughter Kyleigh. Sean explains, “It’s very emotional, that’s why were doing this because we’re hoping someday they’ll be a cure for Kyleigh and other patients.”
Kyleigh suffers from with a rare metabolic disorder called galactosemia. It causes a sugar which is found in milk to build up in her body and poison it, and can cause organ failure and brain damage. Sean says, “It’s very scary, there are a lot of unknowns with this, there is no cure or treatments.”
WBZ-TV’s Lisa Hughes reports.
And because it’s so rare, and affects only one in every 50-thousand babies in the US, there’s very little funding for research so the Lydons and their friends have raised nearly 200-thousand dollars in the past few years.
Today, they presented the latest check for $93,000 to Dr. Berry and the Manton Center for Orphan Disease Research at Children’s Hospital. Dr. Berry explains, “This allows us to the state of the art research.”
Kristine says “We’ve been so grateful to everyone that’s helped, that’s what keeps us going.”
Dr. James Mandell, CEO of Children’s Hospital Boston, says, “The fact they’ve been able to mobilize their home community an friends for a rare disease, is pretty remarkable.”
Dr. Christopher Walsh, the chief of Genetics for Children’s Hospital explains says, “We can’t study all of the diseases, but committed families like the Lydons can help patients get together and give us a clearer understanding of the disease and help us develop better treatments.”
The Lydons say that’s just the beginning. They’re holding another fundraising walk and 10K/5K race in Braintree on June 12, 2011 at 9:30am and promise to keep raising money as long as they can. If you’d like more information, log onto Kyleighscure.com.