KENNEBUNK, Maine — Ethan Houle and his mom Teresa are used to being active in their community, participating in fundraisers and volunteering for local organizations.
But now, the two are turning to that community for support as Ethan, a 17-year-old senior at Kennebunk High School, needs a live kidney donor. It’s not something that comes naturally for the pair, who walk annually to support Multiple Sclerosis, hold annual fundraisers for local charities at Teresa Houle’s Kennebunk business, The Total Look Salon, and participate in Big Brothers Big Sisters [Ethan is the big brother to a fifth-grade boy], but they are moving forward one day at a time, with faith and a little help from their community.
On Ethan’s 16th birthday — also Mother’s Day — he came down with the flu while preparing to participate in their annual walk for MS. It was unusual, Teresa said, that her son, an active and healthy teenager, could not beat the symptoms.
“I was concerned,” said Teresa, who brought Ethan to the doctor where they received troubling test results. They were sent to Southern Maine Medical Center and learned that Ethan’s kidney function was extremely low. Doctors discovered that both of Ethan’s kidneys were damaged and inflamed due to an unknown virus that settled in his kidneys.
“The inflammation it has caused has done so much damage to his kidneys that he has 20 percent function out of both,” Teresa said, adding that doctors do not know the cause of the virus, when it happened or why it settled in Ethan’s kidneys.
While Ethan tested negative for an autoimmune disease, Teresa said the virus set off an autoimmune response within his body.
In the past year-and-a-half, Ethan has undergone biopsies, ultrasounds and other tests and has had more than 300 tubes of blood drawn. He has been heavily treated on medications that cause a plethora of symptoms, including water weight gain, insomnia, joint pain, acne and fatigue.
“It’s not easy for him as a teenager; it’s not easy for me as a mom,” Teresa said.
A fan of golfing and go-kart racing who previously worked two jobs — at a golf course and gas station — Ethan says his body is often fatigued and in pain, and he has to be careful because his immune system is compromised. On days he feels good, he attends the Biddeford Regional Center of Technology for automotive mechanics. He also takes online courses to finish his senior year at Kennebunk High School.
“I try not to think about it too much, because if I do, I’ll get overwhelmed,” he said. “I take it one day at a time.”
Despite the medication and the “horrendous” side effects Ethan has endured, the inflammation in Ethan’s kidneys keeps coming back. If doctors were to try to take Ethan off the medication now, Teresa said he would go into kidney failure.
Teresa is not a match for her son, and doctors say they want to see the transplant happen by January.
Because of the timing, the damaging effects of medications on Ethan’s body, and the potential for the healthiest match, a live donor is needed.
“Some people can wait. We don’t have that option for him because of the pills and everything. We need to do this really quickly,” Teresa said. “Every time we try to cut him back or take him off [the medication], his kidneys inflame and he loses more function.”
“It’s kind of a catch-22,” Ethan said.
The donor needs to be of A or O blood type, Teresa said, and the Houles would be responsible for covering the donor’s costs. The estimated cost for the entire process is approximately $500,000, and Teresa said her insurance has indicated it will cover half of that total cost.
Anyone looking for donor information can visit the Maine Transplant Program website or contact Roxanne Taylor, living donation coordinator for Maine Medical Center’s transplant program, at 800-570-5230 or email email@example.com. Everything is confidential.
To support costs for the Houles, a fundraiser will be held 5:30 p.m. Nov. 23, at the Nonantum Resort. The evening will celebrate “Experiences and Living Life,” and the cost is $30 for adults and $25 for teens. There will be music from Straight Lace, a silent auction and raffles, as well as some surprises. Auction items include an African safari and a White Mountains cross country ski package.
Tickets will be sold at the Total Look Salon at 1 High St., the Kennebunk High School main office and Biddeford Savings Bank in Kennebunk. The goal, Teresa said, is to sell 300 tickets.
Those interested in buying tickets or sponsorship opportunities, email Teresa at firstname.lastname@example.org.
The family has created a website, at www.ethanhoulekidneyforlife.org, to share information on Ethan and upcoming events. In addition, a nonprofit account has been set up at Biddeford Savings Bank. Checks made payable to “Ethan Houle Kidney for Life Fund,” can be mailed to Biddeford Savings Bank, 69 Portland Road, Kennebunk, ME 04043.
“It’s difficult being on the other side. I’m used to doing everything on my own,” Teresa said. “But we figure since it’s something we need to do, we’re just going to have a really good time doing it. It’s an evening for everybody to celebrate life, but also to experience Ethan and celebrate him. He’s a very special young man.”