Holding On

Until August 15, 2011, Alison was like any other 14-year-old girl. She was about to go into the eighth grade. She enjoyed riding her horse, Sassy. She loved drawing and painting. She also loved playing the trombone and singing. And Alison especially liked the time she could spend with her younger sister, Loretta. Then, that night after being flown from Aberdeen to Sanford Children's Hospital, Alison's world changed dramatically. She was diagnosed with renal failure due to vasculitis, an auto-immune disorder with no known cause.

Alison’s mom, Colleen, said this specific type of vasculitis is considered chronic and very rare in children. For almost a year-and-a-half, Alison battled gastrointestinal and allergy symptoms. After many doctor's visits and several tests, there were no explanations. Then, during the first week of August, her ankles and face began swelling. She also fought extreme fatigue.

For now, there is some good news! The vasculitis is in remission. Alison's doctors believe it is altogether possible it will stay in remission. As for the kidney disease, the best treatment is a transplant. Fortunately, Alison is a great candidate for this procedure. The family is hopeful that a close family member will be a perfect match. Dad is first in line for testing.

Discussions are still taking place to determine when the transplant will happen. If a live donor match is found they will plan for the transplant within the next year. Until then, the family makes monthly visits from their home to see the specialists in Sioux Falls. For Alison, being four hours away from home is the hardest part of her treatment.

Colleen says that this has been difficult for the whole family. Alison's 11-year-old sister has had to go without her family--a lot. She has had to stay with grandparents and aunts and uncles. Colleen says that video chats and cell phones for constant contact with Loretta have been a huge blessing, but they still miss being a family in one place.

Many people have stepped in to help do things for her that Colleen would do as a mom. The family has also received help with their farm. Alison has missed a good portion of school. She's able to keep up with her schoolwork with help from the hospital's teacher and the volunteers. Even their evening and morning routines have changed since Alison undergoes nine hours of peritoneal dialysis every night. Colleen anticipates more changes as they get closer to transplant time.

She says they there have been times when they got angry and sad but don't dwell on those feelings. She says it's much better to actually feel those feelings. Then they can focus on learning more about Alison's condition and being part of the team that's making decisions about her health and care. Decisions about the family's future are being re-evaluated as they gain knowledge about Alison's illness. For now, the family feels good about her treatment and are hopeful for Alison's future and the future of their family.

Thank you to Colleen and Alison for their story!