The family of a Scarborough sixth-grader born with a rare genetic disorder is hoping to enlist more people in the fight to cure the disease, or at least alleviate some of its symptoms.
Chris Fitzgerald, a 12-year-old sixth-grader at Scarborough Middle School, was born with Morquio syndrome, which restricts some of his activity, though he doesn’t let much pass him by.
“There are good things to come of it,” he said.
Fitzgerald was diagnosed with Morquio syndrome when he was 3 years old. Morquio syndrome is a disorder where the body lacks an enzyme that would normally breakdown complex sugars. These sugars remain stored in cells in the body causing progressive damage. There are a wide range of symptoms associated with Morquio syndrome, including dwarfism and problems with hearing and eyesight.
Because the ailment is so rare, there is little research being done into its causes or treatment. One doctor believes he may have found an enzyme replacement, but he must first hold clinical trials that will provide evidence that the treatment is successful, which would lead to further studies.
The Fitzgeralds, along with others who are affected by Morquio syndrome, are in the process of raising $3 million to fund the first round of clinical trials. Chris’s mother Cathy will host a scrap-booking event on Oct. 29 to help raise money.
If successful, the enzyme replacement will not totally cure Chris, but could help with some of the symptoms.
“Any result they gain from the trial will benefit the quality of his life,” said Cathy.
Chris, who is three feet six inches tall, has attended Scarborough schools his entire life and the students and staff have been helpful in dealing with his ailment.
The school district has purchased several specially designed chairs that allow Chris to sit level with the table during class. He also has had an aide who helps him travel around the school.
Chris has been using a wheelchair and is now testing an electric scooter, which is easier to maneuver and will reduce the need for the aide.
Cathy said her son has been fortunate with his fellow students and bullying has never been a problem. Over the years she has gone to school and explained his conditions to help people better understand what is happening.
“He has great friends who assist him when he needs help,” Cathy said.
Like other students Chris enjoys being active and enjoys swimming, Cub Scouting, performing with the Gym Dandies and walking in the woods, though he can’t walk too far because he has low stamina.
To help alleviate some of the issues associated with the disorder, Fitzgerald has undergone numerous operations and is planning on undergoing another in November that will fuse his neck to his spine to provide for better stability.
While operations such as these are nerve-racking for the family they understand that “in the end it’s only going to benefit him,” said Cathy.
Chris said it would benefit him because he may be able to travel in cars without wearing a neck brace. He also is hoping to take karate classes after the operation.
To help cope with Chris’s unique affliction, the Fitzgeralds are members of numerous organizations of people dealing with similar issues.
“It’s a great way to connect with other families and bounce ideas off each other,” Cathy said.
It was during one of those meetings that Chris met Ian Michael Smith, who suffers from the same disorder, and is an actor and student at the Massachusetts Institute of Technology.
“He’s a good role model for Chris,” Cathy said.
The Fitzgeralds have held fund-raisers for various organizations they are involved in, including Cub Scouts and the Little People’s Research Fund. Most of these were bake sale-type events, Cathy said.
She said she was looking to do something different for this fund-raiser and decided to use her experience as a consultant for the scrap-booking organization Creative Memories.
The event will be held from 9 a.m. to 5 p.m. on Saturday, Oct. 29, at St. Maximilian Parish Hall on Black Point Road in Scarborough. The $25 registration fee includes a morning snack, lunch and dessert.
Cathy Fitzgerald will be hosting a scrap booking event to benefit clinical trials for Morquio Syndrome on Oct. 29. Her son Chris was diagnosed with the syndrome when he was 3.Send questions/comments to the editors.
