NF Smarty Pants

Archive for the ‘Personal Stories’ Category

The Boys and Girls Club of the Flathead Reservation and Lake County awarded Wade Burland their Youth of the Year Award. Wade has a NF-related tumor growing in his brain stem and down his spinal cord. The tumor restricts his height, which the family hopes to combat through medical treatments.

Lisa Singleton has NF. She has already climbed the Sydney Harbor Bridge once before. This February, she plans to return to climb it again. This time, she’s doing it in honor of her neighbor Jean Williams, who passed away from motor neurone disease.

The Steiner Family (Jodie, Chaun, Braeden, and Bronson) are featured in the Toledo Free Press.

Kirsty Ashton, 18, was surprised at school by a star of her favorite soap opera. Ricky Whittle was there to let Kirsty know that she had to prepare for an upcoming scene in the British TV show Hollyoaks.

Kirsty has NF and has written a book and keeps an online diary about her experiences. She’s also a champion fundraiser.

After an 11-hour surgery to remove a life-threatening brain tumor, Aaron Brown is going home. The Southern Daily Echo has an update on his progress.

Kelly Walters, mother of three-year-old Courtney, shares her family’s story with the UK Sentinel. Courtney was diagnosed at 18 months.

Sixteen-year-old Ethan Brown underwent major brain surgery to remove several NF-related tumors. The local news channel did a focus story. You can also follow Ethan’s progress through the family’s CaringBridge website.

The Hungry Horse News ran a family profile on the Morgan family of Montana. Daughter Jazmyn has NF. The family’s older daughter, Joslyn, has Kawasaki disease.

Even though the family has already faced and will continue to face so many medical challenges, they remain thankful for what they have.

The December 2008 edition of Her Life Magazine features a cover story on Julie Hanson. You can access a free PDF version of the magazine from their website.

Julie’s son Jeff has NF. Through his artwork, they both raise money and awareness for neurofibromatosis.

Jessica Stone has a new blog. You can continue to follow her story at Life Inspires Me.