‘Long journey’: Acton woman hoping for a kidney donation
Valerie Lessa has never let her developmental disability slow her down. But now, kidney failure has put her life on hold.
Concordian Valerie Lessa has never let her developmental disability slow her down. But now, a severe medical complication — kidney failure — has put her life on hold as she undergoes dialysis three times weekly at DCI Dialysis Clinic in West Acton while waiting for a transplant.
Lessa, 46, is on the transplant list at Tufts Medical Center in Boston, but she has also launched an effort to find a living donor, which would mean she could have a new kidney within several months rather than the four to eight years she’s expecting to wait for a Tufts donor. Lessa’s brother was tested to be the donor but was ruled out.
A video in which Lessa appeals for a donor has received more than 900 views. Anne Marie Krause, Lessa’s aunt, said they’re hopeful the video, posted in conjunction with Littleton Community Television, will lead to a donor, but she has cautioned her niece that it may not.
Lessa has Cornelia de Lange Syndrome (CdLS), a rare genetic disorder that causes intellectual delays ranging from mild to severe, as well as physical characteristics, such as small hands and feet or cleft palate, and behavioral issues such as self-injury and compulsive repetition.
“It’s kind of hard to explain; it’s a disability I was born with,” Lessa said. “It makes me a little slower. There’s some things I can’t do. For example, I have to depend on other people to get places, because I can’t drive.”
Krause said her niece’s disability is relatively mild.
“She pretty much lives independently,” Krause said. “She’s lived in her own apartment for years now with another lady who has developmental disabilities. … That’s her best friend. Valerie has always been active in the community.”
‘A very creative person’
Lessa worked for years at Ames and then Kmart department stores. She was a client of Minute Man Arc and also volunteered for the organization, which serves people with developmental disabilities. She’s been volunteering for Nature Connection in West Acton, which specializes in therapeutic programs for those with limited access to the outdoors.
Taylor Eagan, Nature Connection’s executive director, said the organization brings plants and small animals into memory care units, group homes for youth, and other “congregate care facilities.”
Lessa lives just around the corner from Nature Connection and started helping with filing paperwork and feeding the therapy animals.
“She’s a very creative person,” Eagan said. “She does photography and loves to do art. She really cares about the community she’s in and the people that are there. She is so connected to so many of the businesses here in West Acton.”
‘I’m just too drained’
Before her diagnosis of kidney failure last March, Lessa would help out at Nature Connection throughout the week, but since starting dialysis last June, she has had to cut back.
“She still keeps an eye on our animals on the weekend but hasn’t been able to come during the week,” Eagan said. “We’ve got some rabbits, guinea pigs, and chinchillas,” she said. “Also turtles and snakes and garden snails.”
Lessa said the dialysis makes her extremely tired. “I’m just too drained to do anything,” she said.
It’s also been a painful process.
Lessa began with a dialysis port in her chest, which is meant to be temporary, but attempts to place ports in both of her arms failed.
“She has a wonderful team of doctors, but her veins are very tiny, and they spasm a lot, too,” Krause said.
Lessa now has a port in her leg, which Krause said is working well so far.
“We still have the chest [port] in until we know the leg [port] isn’t going to give us trouble,” she said.
“This has been such a long journey for Val,” Eagan said. “It’s been one obstacle after the other. In all of this, she has handled it with so much grace.”
