Written by: Kellen Beutler
Bethel's volleyball team signed a new member on Wednesday, April 24. She's not the typical player, but she shares the same love that the other women do for the sport. Her name is Lily Strang and she's 6 years old.
You would never know by watching this pint-sized, bundle of energy play tag with the volleyball players that she suffers from Fanconi anemia, a rare genetic disease that mainly affects bone marrow and results in decreased production of all types of blood cells.
Lily was diagnosed with Fanconi anemia in May 2008 when she was 18 months old. As a result of the illness, Lily was born without thumbs and was bullied in school by the other kids. Luckily, another woman whose daughter had Fanconi anemia heard about Lily's situation and suggested that Lily get involved with a program called Team Impact, a group that pairs up athletic teams with kids that have debilitating diseases to get them social support and encouragement.
Lily developed a love for volleyball in the past year when she played at school, despite the frustrations that come with playing with no thumbs. So when Team Impact contacted Erin Furr, Lily's mother, with the news that Lily would be an honorary member of Bethel's volleyball team, she was ecstatic.
"I was so excited because we didn't know it was going to be volleyball," says Furr. "It's really neat what these girls are doing for her already."
Volleyball Coach Kevin Ulmer is just as excited to welcome Lily onto the team. As honorary member, Lily will be able to sit on the bench during games, hold the official game ball, interact with the girls before and after games, and participate in off-campus activities coordinated by the players.
"Getting a peak into the type of life she has to live every week, you know, with the many challenges she has to go through, gives us a lot more perspective on how blessed we are to be healthy and to be able to live fairly normal lives and not have to go to the doctor every week," says Ulmer.
Volleyball player Morgan Fox also emphasizes what an inspiration Lily is to the whole team.
"It's just cool to see how her mom is teaching her to just be proud of who she is as a person and just be strong," says Fox.
Furr has been instrumental in the inspiring story of her daughter. To help raise support, Lily sells origami cranes, an idea proposed to Lily's mom by a stranger who heard she was fundraising for the Fanconi Anemia Research Fund. Legend says that any person that makes 1,000 origami cranes gets a wish. This mysterious stranger asked Lily's mom if she could make 1,000 cranes for Lily and wish for her good health to help with fundraising.
"I told her, absolutely yes," says Furr.
Lily's been selling them ever since; in fact, she sold them at the signing. But even more precious to Lily than the money is the opportunity to be a part of a team that accepts her as she is, and plays games with her like any other little girl.
"I'm really excited to play different games every time I come here," says Lily.