Youngster is an inspiration to all who know him
By Heather McCrae
The Scugog Standard
When the Rebecca Run for SMA occurs on July 8 at Fairy Lake in Newmarket, a little boy from Port Perry will be the honoree.
The run is a means to raise money for cure and treatment research for Spinal Muscular Atrophy, a disease that six-year-old Hayden MacIntyre deals with each day of his young life.
When the Rebecca Run first started four years ago, the goal was to raise $500,000 in five years. Having now raised $400,000 since that inaugural run, organizers are hoping to exceed their expectations.
Hayden was eight-months-old when he was diagnosed with this devastating neuromuscular disease (SMA), Type I/II.
SMA is the number one genetic killer of children under the age of two years. The disease destroys the nerves that control body functions we take for granted, such as crawling, walking, neck control, swallowing and, even breathing.
Facts show us that in one in 40 people carry the gene and one in 6,000 babies are born with SMA. Fifty per cent of the children diagnosed will die before their second birthday.
But, young Hayden, who weighs 29 lbs. “soaking wet” has beaten the odds.
The young boy, with the forever impish grin, was born Jan. 29, 2000. At age four months, he seemed slower than other babies his age.
“Hayden wasn’t kicking his legs, couldn’t hold his head up, and made no attempts to crawl like most babies his age,” his doting mother, Tina said.
After visits to many doctors, "a simple blood test was all it took to make the devastating diagnosis," Mrs. MacIntyre said.
"The medical staff told us Hayden would not live past two years, and to take him home and love him as the disease took its course."
Hayden has outlived his doctors’ prognosis, however, he still has a multitude of health problems.
SMA has caused contractures in his joints, severe scoliosis in his spine and a very misshapen chest. He needs help with every body function.
In order to keep him upright, Hayden is squeezed into a rigid body jacket which helps to support his spine. As well, he is fitted with hand splints and braces on both knees.
All of this enables him to motor about the MacIntyre’s spacious home in his $28,000 wheelchair.
Because he eats very minimally a pureed diet, 90 per cent of
his nutrition is fed to him through a gastroscopy tube, a special tube that
goes directly in his stomach.
“Hayden couldn’t live without this G-Tube and his wheelchair is his
lifeline, allowing him independence,” his mom said.
Mrs. MacIntyre doesn’t like to refer to SMA as a disease, but rather as “a condition” her husband, Ian, and very active three-year-old daughter, Lauren, have all come to live with.
A stay-at-home mom, she relies heavily on a SMA support group that was started by a mother who lost two little children to SMA.
“It has a web site and a message board which I log on to every night. Here, people post triumphs and tragedies every day. They are my lifeline.”
So the family gets much-needed sleep, nursing care comes to stay the night to monitor his breathing equipment and feeding pump, change him and maintain his heart rate and oxygen level.
Hayden is a mature little boy, far beyond his years.
“He’s six and worries about his oxygen saturation and his heart rate. He shouldn’t be worried about these; he should be worried about his toys and his dinosaur collection.”
The Rebecca Run is named for Rebecca Grace van Fraassen, a seven-year-old from Limehouse who has SMA. It’s Rebeccas’s aunt, Louise Smith, who is the race director.
Every year the Rebecca Run has been held, the honoree’s family has chosen a charm for that year’s race. The MacIntyre’s have chosen a hummingbird charm, which sells for $10.
“The hummingbird is a messenger of joy and it made so much sense to be a symbol of Hayden,” Mrs. MacIntyre said.
“There isn’t a day that this child doesn’t wake up with a smile. He loves the life that he has and that’s what keeps us going. We’ve all grown up with this condition, and are exhausted, but it’s a part of our lives.”
There are three different events, the 1KM SMA Scamper race, and the 3 KM and 5 KM races.
Last year Hayden did the 1K in his wheelchair, with his family by his side.
“He was the last one to cross the finish line last year but, boy, you should have seen the grin on his face and heard the uproarious applause,” Mrs. Hayden said, her eyes glistening with tears.
To register to run or walk, the fee is $30 until June 24. After that date the fee jumps to $45.
Hayden’s family is making up a team called Hayden’s Heroes, anyone who wants to join or walk or run in his honour can by contacting Louise Smith at 905-836-9121 or louise@rebeccarun.com.