H.A.L.O. Works With MassGeneral Clinic

Kids who have conditions like muscular dystrophy, congenital myopathy, spinal muscular atrophy and mitochondrial disease can’t make their muscles work predictably, so they miss out on a lot of fun. Plus, they have to make frequent visits to the doctor and hospital.

In 2009 H.A.L.O. teamed up with the Pediatric Neuromuscular Clinic at MassGeneral Hospital for Children in Boston to help 30 of about 300 regular patients feel a little bit better about coming to hospital appointments.

The clinical team consulted with patients’ families, then purchased gifts from their personal wish lists. They presented the gifts as a surprise, usually at the patient’s next appointment.

“It was pretty special for the kids,” said Laurie Bliss, clinic coordinator, who, along with medical students Kelly Dominick, Kristen Lundgren and Jamie Brown identified the patients who could benefit from attention.

Gifts included books, Legos®, blocks, Hannah Montana® videos and things like movie gift certificates for older children. Recipients were 4 to18 years old.

“Everyone was so excited and thankful,” said Laurie. “When I gave one little girl her gift she couldn’t stop jumping up and down (albeit small hops) because she was going to be able to see a movie with a friend.”

Dr. Brian Tseng, MD, PhD and Director of Pediatric Neuromuscular Service at MassGeneral Hospital for Children, said the gift program dramatically enhanced the lives of the patients, because it came “out of the blue” and demonstrated that someone cared about their daily struggles.

“I work with amazing children and families who are unfortunately touched by devastating neuromuscular disorders. H.A.L.O.’s generosity made them feel extra special.”

To learn more about the clinic please visit: www.mgh.harvard.edu/children/specialtiesandservices/neuromuscular/

Or call 617 840-0528.