Robert Langell, a Georgetown fifth grader, suffers from the rare genetic Fragile X syndrome. Learn more about him, the disease and the Robert Langell Golf Tournament to benefit Fragile X research, which will be held Tuesday, Sept. 30 at Turner Hill Golf Club in Ipswich.
Robert Langell loves the beach. It is one of his favorite places to hang out. The Georgetown fifth-grader, who has the rare genetic Fragile X syndrome, is most comfortable in a setting with no surprises, no changes, and no loud noises, says his mom Didi Langell. Fragile X children develop autism and developmental disabilities.
“You have to plan, plan, plan,” says Didi. “Everything is very scheduled. It makes it hard on our other two kids, but that’s what we have to deal with. We have great friends helping us out in town.”
Didi’s other two kids are Nicole, 14 and a freshman at Georgetown Middle/High School, and Richard, a seventh-grader at the same school.
Robert is attending fifth grade at Penn Brook School with a great deal of help from his special education teacher Katie Lescarbeau, who describes him as a joy to work with.
“Robert does very well with routines and knowing what’s going to happen at school,” says Lescarbeau. “He has quite a sense of humor, and he can always make people around him laugh. He is very friendly, and he really loves being around his friends at school. He also loves the ducks in the courtyard. Spring is a very exciting time here.
“It can be difficult for people who do not know him to understand what he’s saying, but he has a lot to say on many different subjects. Sometimes he uses a little computer to make it easier to understand him. He truly is a joy to work with. He’s taught me a lot as a teacher.”
Didi and her family remain hopeful for her son’s future, because research is making inroads on the condition.“The more they research, the more they find,” says Didi.
Drug companies in the United States tend not to fund research for rare diseases like Fragile X, because not enough people have these diseases to make a profit for them. Research depends on private fundraising efforts, and a big one is under way for Tuesday, Sept. 30. Robert’s uncle Barry Davidson has organized the Robert Langell Golf Tournament and dinner at the Turner Hill Golf Course in Ipswich.
Starting at noon on Tuesday, the event will feature golf, followed by a buffet dinner at the club and a silent auction with some really big auction items. There are tickets to the 2009 U.S. Open, Red Sox tickets, Patriots tickets, and a week at a condo in Florida among other tempting items.
Tickets for the big outing are $40 a person, with $20 paying for dinner and $20 going to support FRAXA, a Newburyport organization that is searching for a cure. The entire proceeds from the auction will benefit FRAXA.
Item donations for the silent auction are being sought, and can be dropped off at the Langell’s home by calling Didi at 978-352-8496, e-mailing her at firstname.lastname@example.org, or mailing to 34 Baldpate Road, Georgetown, MA 01833. You can also send donations directly to FRAXA by mailing a check to FRAXA, 45 Pleasant St., Newburyport, MA 01950.
Thanks to fundraisers like the Robert Langell Golf Tournament, research is underway on Fragile X, with promising preliminary results on the drugs minocycline, novartis and fenobam, according to the Fragile X Research Foundation Web site, www.fraxa.org. Information on research studies on Fragile X and the FRAXA organization is also available on the FRAXA Web site.