NF Smarty Pants

Archive for the ‘Children’ Category

The Taman Megah Handicapped and Disabled Children’s Home in Malaysia provides a home and services to children with disabilities, such as neurofibromatosis. They are trying to combine their scattered resources to be better able to care for their residents. Read about it in The Star.

Read a quick and well-written column to which every parent can relate.

The Kansas newspaper The Morning Sun has a story about Cheyenne Batchelder. This six year old had extremely thin bones in her right leg as a result of NF. Eventually, the leg had to be amputated.

She now is in the process of learning to master her new prosthesis.

Alexis “Ali” Didier from Bolingbrook, IL, is going to Disney World thanks to the Make-A-Wish Foundation. Recently diagnosed in 2007, Alexis has jumped into the campaign to fight NF. She and her family will participate in an upcoming NIH study.

They will also walk in NF, Inc. Midwest’s Great Steps fundraising walk this year.

Alexis’s Girl Scout troop joins the effort by selling wristbands and lip balm.

Coast Mental Health, a Vancouver-based mental health organization, is seeking nominations for its Courage to Come Back Award. The deadline for submissions is February 16.

In 2006, Jeneece Edroff, now 14, won the award for being a tireless fundraiser despite battling serious effects from her NF.

As of last year, the Jeneece and Friends Coin Drive has raised more than $1 million to benefit children with special needs. Jeneece Edroff, the creator of the coin drive, is now 14 years old.

The 2009 Coin Drive just started and will continue through Februrary 22. Organizers hope to make this their best year ever.

Kaide Oliver has NF. Two years ago, he was also diagnosed with a brain tumor. Doctors believed that nine-year-old Kaide is only the second person in history to have both neurofibromatosis and this particular type of aggressive brain tumor.

After surgery, Kaide now appears to be cancer-free and has beaten the odds. Cancer Research UK named Kaide Oliver a recipient of its Little Star Award.

Ashley Gankiewicz was diagnosed with NF1 before she was a year old. At the age of three, she developed an inoperable brain tumor. Now six, she’s been adopted by the Columbia University Womens Soccer Team through the Friends of Jaclyn Foundation.

ESPN has an excellent story about the teaming up of Ashley and the Lady Lions. Then read Bob Ettinger’s lovely commentary in the Star Beacon.

The Make-A-Wish Foundation and the Home Builders Association of Burlington-Alamance County built 11-year-old Brooke Bristow a private game room. Brooke and her friends can play Nintendo Wii, air hockey, and watch dvds right in her own backyard.

Benefit4Kids is a wish-granting organization that arranges special outdoor experiences (camping, fishing, hunting, etc.) for children under 18. Read about how they put together an Alaskan fishing trip for Nick Wallace and his family.