Local Girl Honored In Riley Art Therapy Tutu Fundraiser
Posted
Staff Report-
Caroline and Katherine Alderfer are typical princess-loving 4-year-old twins from Winona Lake, but they do not have a typical life.
The twins are daughters of Alan and Kristine Alderfer, Winona Lake.
In early 2010, Katherine began experiencing leg pain, vomiting and began choking on her food. This was followed by the onset of a rash on her face, feet, fingers and toes, as well as such pain and fatigue that she could hardly get up the stairs in her home.
In May 2010, Katherine was diagnosed with a very rare autoimmune disorder called Juvenile Dermatomyositis. The disease can cause debilitating symptoms including muscle pain and weakness, ulcers, rashes, severe fatigue, lung and heart problems, calcinosis (muscle hardening), swallowing and digestive problems.
The disease strikes two to four out of a million. Some children will experience remission, but others will battle the disease their entire life. Medication can help relieve the symptoms, but there is no known cure.
Since her diagnosis, Katherine has received high doses of steroids, medication to protect her stomach, weekly chemotherapy drug injections, as well as daily steroids.
As a result of this disease, she cannot be in the sun, has eight fractures in her vertebra, doubled her body weight and suffers from osteopenia, among other things. Katherine often requires a walker or wheelchair throughout her day.
Katherine and her family found help at Riley Hospital for Children in Indianapolis.
Her mother, Kristine Alderfer, explained, "When Katherine was diagnosed with Juvenile Dermatomyositis in May 2010, we had no idea what was in store for our family.
"We have experienced a year like no other with experimental treatments, nasty side effects, weekly trips for infusions at Riley, several hospital admissions and debilitating pain for our daughter."
Alderfer said, while it has been a horrible time for their family, some good things have come from it.
They have met some amazing people on their journey to helping find a cure for this rare disease. The people at Riley have touched their family.
They have shown compassion, kindness, professionalism and love toward their family. Katherine, and her twin Caroline, have been especially helped by Michelle Itczak, who is the art therapist at Riley.
Doing art has helped both girls get through a devastating experience, and it has given them a creative outlet to help them through this time.
They have discovered creativity through the art and it has opened a new world for them. The family is thankful for Itczak and the art therapy program. Riley's art therapist focuses on the emotional well-being of the patients while minimizing the adverse effects of the hospital experience.
It is in Katherine's honor that Little Diva Tutus of California created the Katherine Alderfer Tutu benefitting the Riley Hospital for Children Art Therapy Program.
According to Melissa Jones, owner of Little Diva Tutus, "When I read about Katherine and her family I knew Little Diva Tutus had to help. We are excited to be a part of this wonderful fundraiser honoring beautiful Katherine and supporting Riley Hospital's Art Therapy Program."
A portion of the profits from the sale of the Katherine Alderfer Tutu will be donated to the Riley Hospital for Children Art Therapy Fund. The tutu was designed by Katherine and includes several colors. The website photos were taken by local photographer Leah Hoskins.
Tutus are available in virtually any size at www.littledivatutus.com
According to Dana Leon Huffer, who coordinated the fundraiser, Little Diva Tutus was recently featured as "swag" at the Golden Globes and pre-Oscars festivities. No doubt that celebrity children will be wearing The Katherine Alderfer Tutu and helping to support Riley, said Huffer.
To order a Katherine Alderfer Tutu, visit www.littledivatutus.com/-c-85/katherine-alderfer-tutu-for-riley-hospital
