Family Continues Fight Against Rare Syndrome

Occasionally in life, people are blindsided by unfortunate events. For the Burke Family, Sanfilippo Syndrome—a rare mucopolysaccharide storage disorder that effects every cell in the body causing developmental delays, memory and speech loss, and a myriad of physical symptoms—was an unseen tragedy that effects all three daughters in the Burke Family: Jillian (24), Lindsey (21) and Kelsey (18). Most people diagnosed with Sanfilippo Syndrome aren't expected to live past their teenage years.

“When they were first diagnosed, there really was no hope,” said Nancy Burke, mother of Jillian, Lindsey and Kelsey, who along with husband, Paul, have been struggling to keep their daughters healthy for years. “Doctors knew so little about it, and basically the doctors said to my family, and so many other families I've talked to, they said, 'Just take your child home and love them.'”

Fortunately, for the Burkes and other families battling Sanfilippo, the future is looking a little brighter. Explained Nancy, “Things are changing today, the technology has changed with computers, exchange of information, hopefully it will happen in time for our girls, there is really a possibility for finding a cure for this syndrome, unfortunately, it just takes a lot of money.”

In order to raise the funds necessary for more research into the syndrome, Nancy and Paul started the JLK Sanfilippo Foundation—a dedicated non-profit working to raise money for deeper understanding of the disease, and hopefully, one day, a cure.

“It is an extremely, extremely rare syndrome, when you have children that have these very, very rare syndromes there isn't a lot of money donated for research,” added Nancy. “We have our own foundation and are working with other families of children that have their own foundations and we are trying to band together. Every penny that gets raised is going right to research.”

The next fund raiser the JLK Sanfilippo Foundation is this Sunday, Sept. 25 at the on 32 Montvale Ave. in downtown Woburn from 11 a.m. to 1 p.m. Nancy said these events couldn't take place without the wonderful support of volunteers like Sharon Valerio, a Bowladrome employee and friend of the family that helped bring the event together.

“It just breaks your heart,” said Valerio. “With something like this, something so rare, it just makes it all the harder to raise money and get the word out.”

The Burkes and the Bowladrome are asking for a $15 donation in exchange for an hour of bowling and a lunch cooked by Valerio and the Bowladrome Staff. There is also the chance to win a host of raffle items including: a $150 gift card to Seasons 4 Lawn Furniture in Lexington, an over-night stay at Charles Hotel in Harvard Square, a gift certificate for private horse riding lessons in Andover, original paintings and prints by local artists, an autograph hockey puck from Mark Recchi of the Boston Bruins, wine, gift baskets and more.

“We are fortunate in many ways our girls have lived this long,” said Nancy. “As challenging as it has been, it has made us more resolved we need to fund this research.”

If you would like to buy a ticket for the upcoming fund raiser, or talk to Nancy directly about a donation to the JLK Sanfilippo Foundation, please email her at BurkeJLK@msn.com.