Toddler with 'ultra-rare' disease released from Franciscan Children's Hospital

BRIGHTON, Mass. — Raistlin Anderson was showered with bubbles as he left Franciscan Children's Hospital in Brighton Monday.

It's a tradition for patients leaving the facility.

After nearly a year as an inpatient, 2-year-old Raistlin is finally heading home.

"Two years, one month and 14 days -- I think -- now," his mother Lydia Anderson said.

Raistlin was born into a military family that was on the move since his birth, but things changed when he was diagnosed with Multisystemic Smooth Muscle Disease Syndrome (MSMDS).

"I think he's been out of the hospital for maybe 18 hours or so -- a total of five different trips just to hang out," his father, Warren said.

The ultra-rare disease caused his family to move to the Northeast to give him access to the best medical care.

"He was around 34th person to be diagnosed with it in world in the history of humanity. So that kind of rare," Lydia said. "You don’t run into people who have heard about it or know about it."

MSMDS is primarily caused by a genetic mutation and is so rare that there are less than 50 known cases in the world.

The condition affects the smooth muscle in the body and can affect the body's circulatory, respiratory and digestive systems.

There is no cure for the disease, but Raistlin's parents hope to improve lives and treatment options by working with researchers and clinicians.

MSMDS is a vascular disease that affects the smooth muscle throughout the body, including weakening around the bladder, intestines, lungs and blood vessels.

Raistlin uses a tracheotomy tube and will need a lot of care.

"They also have to be careful caring for him on a ventilator and be able to trouble shoot what's going on with that," Dr. Elisabeth Schainker told Boston 25 News.

But his family is just happy to be together and taking him home.

"Just to have my family for once all together and in the same house and have our own little beds to sleep in and those beds not be located in a hospital," Warren said.

For that, he's grateful.

Cox Media Group