Bryan Glines' nephew, Tyler Matthew, died from complications related to CHARGE syndrome. Glines, along with his sister and Tyler's mom, Kristen, and their families are hosting the Tyler Trot to raise money for CHARGE research. (By Kevin G. Gilbert/Staff Photographer) |
Typical excitement surrounded the birth of Kristen and Jason Matthew's first child.
There was a nursery to decorate, a name to select and last-minute preparations as they awaited one of the biggest moments in their lives.
The moment would be bigger than they ever imagined.
Tyler James Matthew was born in the Baltimore area on Aug. 2, 2004 — a week past the due date, resulting in an induced delivery that ended in an emergency Cesarean section.
But as Tyler was placed on his mother's chest, she sensed something was wrong, she said.
His breathing wasn't normal.
"He seemed to be struggling as though he were drowning," Kristen Matthew said.
The medical staff immediately began working on the infant, including suctioning. But there was no relief.
The diagnosis
For 17 days, Tyler underwent tests, all the while still struggling to take a breath.
After being transferred to Johns Hopkins Medical Hospital, a bronchoscope discovered the infant had a floppy airway. He ended up having a tracheostomy on his 3-week birthday.
But Tyler had other problems, besides his airway, his mother said. He was born without functioning T-cells and underwent a T-cell infusion from a matched donor.
He was eventually diagnosed with CHARGE syndrome — a genetic pattern of defects involving extensive medical and physical difficulties that differ from child to child.
The letters in CHARGE stand for Colomba of the eye; Heart defects; Atresia of the choanae; Retardation of growth and/or development; Genital and/or urinary abnormalities; and Ear abnormalities and deafness.
In addition to breathing problems, Tyler also was diagnosed with profound hearing loss in both ears and was treated for bouts of dehydration, various bouts of graft versus host disease, swollen lymph nodes and urinary tract infections.
After fighting a brave battle, Tyler died on Jan. 24, 2006, due to complications from a progressive and untreatable lung disease.
A trot for Tyler
To honor Tyler's memory and raise awareness of a syndrome that is unfamiliar to many people, Kristen Matthew and her brother, Bryan Glines, both of Hagerstown, are organizing Tyler Trot, a chip-timed 5K Walk/Run and a Kids Fun Run on Saturday, Aug. 6, at Antietam National Battlefield.
All money raised will go to the CHARGE Syndrome Foundation to benefit the families and children who are affected by the syndrome, said Glines.
If you have never heard of CHARGE, you're not alone, Glines said.
"Prior to Tyler, no one in our family had heard of it, either. It took all of us Googling to find out as much information about the syndrome as we could," he said. "I am actually still trying to understand everything about it and am trying to raise as much awareness as possible to help people understand it, as well."
Statistics show that CHARGE syndrome affects one in about every 10,000 births and the majority of time, there is no family history.
That was the case with Tyler.
"This is the first and only known person in our family to be diagnosed with the syndrome," Glines said.
Throughout her pregnancy, Kristen Matthew said there were no clues that something might be wrong with her baby.
The diagnosis, Glines said, affected everyone in the family in different ways.
"But I think the most common affect was confusion. Since none of us knew what CHARGE syndrome was, it took a lot of effort on all our behalves to try to understand it. It also brought all of us closer as a family," he said.
Glines said the family did everything they could to help his sister and brother-in-law during a very tumultuous time. Many members would make the drive to Hopkins to visit Tyler and to offer any help they could.
"Every one of us learned about the challenges Tyler possessed and knew how to overcome those challenges. Not one of us gave up or even thought about giving up. Every time a new challenge approached Tyler, my sister and her husband only asked ‘What do we do to take care of it?'" Glines said.
Throughout Tyler's brief life, his mother would blog as often as she could, describing her son's medical problems and the family's life in general.
The blog addressed Tyler's ongoing issues, such as the many procedures he underwent — from upper and lower GI scopes to orthopedic surgery on his right foot to correct a vertical talus (the opposite of a club foot).
There also were optimistic moments she wrote about, including his wonderful fine motor skills, how he smiled a lot and "is such a happy boy. And cute, too."
"We love him so much and would/will do anything for him," she wrote.
Following Tyler's death, Glines said his sister often mentioned how she wanted to have some sort of an event to honor Tyler's memory and raise money for CHARGE syndrome research.
"This past Christmas, I decided to surprise my sister by laying some of the groundwork in starting a 5K race," Glines said. "I decided on a 5K race because I believe this is a great family-oriented event that everyone can participate in."
Glines said both he and his sister have done "pretty much all the heavy lifting in organizing the event. But, overall, this has been a family-planned event, with everyone helping in every way they can. On race day, every member of my immediate and extended family will be assisting somewhere from pre-race to post-race. It's going to be a fun yet emotional day."
Glines said the family hopes to make the race an annual event.
"Why would it be amazing to give to CHARGE syndrome?" Kristen Matthew asked. "Because it is a foundation solely run by individuals who are either parents of children with CHARGE or individuals who have a family member affected by the syndrome. Because unlike many other syndromes, these children could be needing attention from up to 20 or more different medical specialties and some insurance carriers stop paying. They just stop. A family caps out and they just stop."
"Also," she added, "because my son, Tyler James Matthew, is amazing. And because, hard as it all was, I would do it all again."
If you go ...
What: Tyler Trot 5K Walk/Run
When: Saturday, Aug. 6; 8 a.m. registration, 9 a.m. 5K Walk/Run, 10 a.m. Kids Fun Run
Where: Antietam National Battlefield, 5831 Dunker Church Road, Sharpsburg
Cost: $30; Kids Run is free to those younger than 12
Contact: Go to www.chargesyndrome.org or email Kristen Matthew at matthew_12067@msn.com
More: Awards given to top three finishers in two categories: 18 and older and 17 and younger
