On Sunday, September 27th friends and family of 4-year-old Kathryn (Kate) Woodside came together in Windham to participate in the “Virtual Walk for a Better Life” to benefit the Alagille Syndrome Alliance.
When Kate was born, there were no signs of the genetic disease that affects her life daily. But when she was just a few weeks old, her coloring began to change and she spiked a fever. A trip to Express Care led to the emergency room, and eventually a stay at the Barbara Bush Children’s Hospital, where multiple tests were performed to determine why Kate’s liver wasn’t functioning properly.
After the most severe disease possibilities were ruled out Kate’s parents, Chandra Turner and Ryan Woodside, were sent home with their daughter, still not knowing what was wrong.
“We were excited to be going home, but it was scary,” said Turner. “Suddenly you’re home and things are still bad and you don’t know why, and you just have to wait. That was hard.”
The genetic testing that followed could have dragged on for years without answers. Luckily, Turner and Woodside’s insurance paid for the expensive jaundice chip test, which tests for all disease possibilities at once, rather than just a few at a time.
What it revealed was that Kate has Alagille Syndrome, a genetic disease that can have many effects, including liver, kidney and heart disease, as well as changes in the eyes and bones. Kate has progressive liver disease, and may need a liver transplant at some point. “Not today, and probably not tomorrow, and we don’t look any farther than that,” said Turner. “We just take it day by day with her liver.”
Kate has no kidney issues, and though there is narrowing of the arteries in her heart, it isn’t causing any difficulties for her at this time. Her eye pressure has remained normal so far, and her bones are doing well. But still, she’s on seven regular medications to help treat the symptoms of her disease, and her spleen is enlarged due to the liver disease.
One of the worst symptoms, said Turner, is itching. Much of the medication that Kate takes is to try to manage the itch, said Turner, and they seek other solutions that provide her with some relief without digging her skin, such as using surgical scrub brushes or tingly lotions. Not being able to help with the itching is one of the hardest things, Turner said. “You look at your little child and there’s not a thing you can do about it, and it’s really frustrating.”
The Alagille Syndrome Alliance, which is based in Oregon, has been an important resource for the family. Through the organization, they have been able to connect with other families dealing with the same rare disease.
Every fall the Alagille Syndrome Alliance does the Virtual Walk for a Better Life. “That’s really what we’re focused on with Alagille Syndrome. We know a cure is really far off and unlikely – when you have a disease that is as small as this, it’s hard to get researchers and companies to dedicate the time to work on it,” said Turner.
The virtual walk allows people all over the country to plan their own events. Participating is a way to give back to the Alagille Syndrome Alliance, says Turner. “They’ve been such a great resource that we wanted to be able to give back,” she said. It’s also a good excuse to get friends and family together, honor Kate and be thankful for the blessings they have, Turner added.
Despite all her challenges, Kate is doing well at this time. “There are no promises and there are no guarantees, but by all intents and purposes she should be able to live a long and healthy life,” said Turner.
Kate doesn’t have many limitations on what she is able to do although she needs to be careful about blows the abdomen because of her enlarged spleen. And though she’s still quite sick, Turner said they try not to play that up. “She’s really sick and she’s got a ton of challenges that most kids can’t even imagine, but she doesn’t know the difference. She smiles and laughs and plays harder than most kids do.”
Turner would like to build sensitivity and awareness around the challenges of chronic illness. “It’s important for folks to have a little awareness that chronic illness is hard,” she said. There is a whole additional layer of things to manage, such as going to the pharmacy several times a week or spending hours on the phone with the insurance company, that make stopping by to say hello to someone or doing things out in the community more difficult.
A rare disease can be isolating because people don’t understand and don’t always feel like it’s okay to ask questions, said Turner. Finding small ways to support families dealing with chronic illness can go a long way, she said.
Donating to the Alagille Syndrome Alliance, or to another organization dealing with rare diseases, is one way people can help. “Those national organizations are absolutely lifelines for families like ours. We wouldn’t be able to talk to any other families. We would be completely isolated in what we’re going through if not for that organization,” she said.
Donations can be made online at www.alagillevirtualwalk by searching for Kate’s Krew, or mailed to PO Box 276 in Raymond, c/o The Turners. For more about Kate and her story, visit their Facebook page Kate’s Krew or Turner’s blog at www.kateandellysmom.wordpress.com.