WILTON — Last December, Aaron LeBlanc of Canaan was visiting his grandmother Amy Frances LeBlanc when a medical crisis led to the discovery that his kidneys have failed and he needs a kidney transplant.

Since then, Aaron’s parents, Andy and Amy Elizabeth LeBlanc, have been left with unanswered questions and lots of uncertainty.

Aaron was born prematurely. He has hydrocephalus and when he was 5, he had a bleed and needed several shunt revisions within a six-week period. His grandmother and parents thought he needed another revision in December but his symptoms didn’t quite match previous experiences.

Doctors at Maine Medical Center in Portland discovered that Aaron’s kidneys were extremely small, atrophied and full of scarring. His parents were told he needed a kidney transplant.

His mother recently said, “Looking back, when Aaron was 7 or 8 he had episodes of bed wetting. He was spilling a lot of protein. My mother was a lab technician and she told me ‘I need to pay attention to this.’ The doctor said it would pass.

“Looking back, I ask myself has this (kidney problem) been going on for 10 years? There’s a lot of hindsight.”

Aaron’s mother noted other interweaving kinds of stories. Aaron had been a high-achieving, straight A student in high school.

“He was a hyper-focused student who went to bottoming out in his studies almost overnight. We thought he was tired, going to graduate.

“There are a lot of behavioral changes with kidney disease. They can be crabby, unreasonable. You don’t know why, don’t realize they’re sick,” she said.

Andy added, “That’s why it’s so pernicious. Suddenly we’re in a whole new world. This is an all new ballgame, totally out of our experience.”

Andy said they suddenly had to rearrange their home so Aaron could stay on the first floor. They had to make sure they had reliable transportation to get him to dialysis and other appointments. Aaron has had to go on a special diet.

“It’s been quite a rearrangement of our life; diet, housing, not to mention our own stresses and anxieties,” Andy said.

Aaron’s mom said dialysis works well for some people but not so well for others.

“Aaron’s in the second group. He gets extremely tired, experiences muscle wasting,” she said.

Andy added, “On dialysis day we have to drag Aaron out of bed. He shuffles out the door to get there.

“Our days have been broken up. We have had to rearrange our chores, work, the rest of our lives around dialysis.

“After dialysis, Aaron is wobbly and immediately crashes.He has to go to bed for a couple of hours. He eats, has a few good hours then has to lay down,” Andy said. “As the next dialysis appointment approaches you can see the fatigue.”

Aaron has dialysis every Monday, Wednesday and Friday.

Amy Elizabeth said, “The other part we didn’t know is the kidneys have control over hormones. That puts him at risk for brittle bones, a lot of other complications.

“Because of Aaron’s age he is an atypical dialysis patient,” she said. “If he were younger he could get on the kidney transplant list sooner. As a young adult it’s more difficult to find a donor, Aaron has to sign all the papers.

“I couldn’t go through this if I were sick without some kind of advocacy. Some days it seems insurmountable,” she said.

The LeBlancs lived at the Ronald McDonald House in Portland for 10 weeks after Aaron was born. The transplant offices they now routinely visit are just down the street.

“It’s been interesting to revisit the past,” Andy said. “The stresses have been overwhelming, almost like post traumatic stress.”

Aaron’s grandmother Amy Leblanc said it’s deja vu.

The LeBlancs are hoping a living donor can be found since the average wait time for a cadaver kidney is 10 years.

“Since December Andy or I have cried at least once a day. There is still so much for us to get through,” Amy Elizabeth said. “I completely understand why people are hesitant to donate. It’s a big risk, really scary.”

Aaron’s grandmother said, “There are beacons of hope. I know someone whose son had a successful transplant 15 years ago and is doing well. I’ve put up donation jars at the farmers’ market, taken books there to swap for donations. People are leaving a whole lot of money for a paperback, putting change in the jar. It’s really gratifying,” she said.

Aaron is 20. If a kidney is found before he turns 22 his family can stay at the Ronald McDonald House during the surgery.

“Many people have stepped forward,” Andy said. “To find ourselves supported like this, we didn’t expect that. We’re flabbergasted. We wouldn’t be here now if not for the support of others, even those going through their own medical crisis.”

After a kidney is found, the LeBlancs will still face challenges. The family has farm animals to care for. During the first six weeks after release from the hospital, daily trips to Portland to monitor Aaron’s condition will be required.

A GoFundMe page has been set up to help cover current and future costs associated with Aaron’s condition.

For more information please contact Amy Frances LeBlanc at 778-2685.

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