A Boy Named Kyle

NORTH BRANFORD:

    There is a select and sad group of parents who know the sadness that enters the heart at the funeral of a child–the lost dreams, hopes, and future can compound the death and devastation to the extent that life seems unlivable.

    Lori and Martin Carpenter lost their 16-year old son, Kyle, to lupus, but despite their grief, they have dedicated themselves to help find a cure so other families will be spared the same pain.

    Kyle Carpenter was born April 4, 1988, and the happiness of that day and the health of their baby were simply taken in stride, along with the pride of being parents. When he was 11 years old, Kyle began experiencing symptoms that at first baffled his physicians.

    “His finger got swollen, then the next day his arm, so we took him to the hospital. The pediatrician looked at him and said his kidneys were shutting down,” says Lori. “That began our nightmare. It took about three weeks to diagnose Kyle with lupus. There is a blood test, but it’s not necessarily definitive. We really didn’t know what was happening.”

    Systemic lupus erythematosus is a chronic autoimmune disease that can affect the joints and almost every major organ in the body. The symptoms and severity of lupus varies and, though many sufferers go on to lead lives free of major complications, Kyle’s experience was a terrible onslaught this affliction. He went through years of medication, dialysis, and arthritic pain, but was still able to play baseball and maintain straight A’s in school, according to Lori.

    “Kyle had systemic lupus erythematosus,  which is the worst kind. It attacks the internal organs and that’s exactly what it did to him. It went right through him,” says Lori. “They were very hopeful at first. He had fabulous doctors…we all we very hopeful that he would go on to lead a normal life. He fought back so hard, we really thought he would win.”

    But slowly Kyle’s condition worsened and after a stroke, weeks in a coma, and six months of rehabilitation, the complications simply overtook Kyle and he died on Sept. 24, 2004. Lori says losing their only child in such a devastating and horrific way was more than overwhelming.

    “When he passed–I didn’t think I was going to make it. The only thing that got me through was remembering what Kyle had said, which was ‘Mom, don’t cry.’ He was in so much pain and he dealt with it better than any of us. He still cared so much about me and his father,” she says.

    “As far as I’m concerned Kyle is the Person of the Week. He taught us a lot in such a short time. I’m not sure how we got through it but God blessed us with family and friends who pulled us through the worst time of our lives. I still don’t believe it sometimes.”

    The upcoming event at Lighthouse Park on Sunday, Sept. 28 is one that Lori and Martin truly believe makes a difference. Though there is treatment for lupus, much is still unknown about the disease and there is currently precious little research being conducted to find a cure.

    “We never would have dreamed this would have been what would happen. We have no genetic history of it on either side of the family. No one has ever had it. That’s why we want to find a cure,” Lori says.

    “No one should have to go through what Kyle went through. We need research into this disease. People don’t really know much about it and how bad it is, but we are hopeful that by raising funds we can find a cure,” she says. “There is such promise and hope. It’s so awful to see someone you love go down with it. We don’t want any family to endure that if we can help it.”

The fourth annual Walk for Lupus Now takes place at Lighthouse Point Park, 2 Lighthouse Point Park Road, New Haven, on Sunday, Sept. 28. Registration starts at 9:30 a.m.; the walk begins, rain or shine, at 11 a.m. For information or to register, visit www.lupusct.org.

Pictured: Lori Carpenter and her husband Martin devote much time and energy to Annual Walk for Lupus Now after losing their 16-year old son, Kyle, to this devastating disease. On Sunday, Sept. 28, walkers will raise awareness and money for the cause at Lighthouse Park in New Haven.

Photo by Ben Rayner