Family walking to find cure for twins' rare disorder

Children's Tumor Foundation

SAN ANTONIO -- Kamryn and Kaitlyn are 4-year-old identical twins. They also share a rare disorder.

Strange birth marks appeared on their bodies as babies.

They are living with NF1, or neurofibromatosis, a genetic disorder that causes tumors to grow on nerves throughout the body.

It can lead to blindness, deafness, learning disabilities, disfigurement, bone abnormalities, disabling pain and cancer.

There is no cure.

The twins have undergone chemotherapy.

Their family hopes the walk at Eisenhower Park on Oct. 15 will not only raise money for research, but educate other parents who may not see the warning signs.

NF affects one in every 3,000 people.

The NF Walk Program is a community event to support NF research, raise awareness and provide support for individuals with NF and their families. NF Walks are organized by local volunteers. Events may include walks, 5Ks, and kids fun runs, plus other fun kid-friendly activities.

•     The Children’s Tumor Foundation is a national non-profit organization dedicated to driving research, expanding knowledge, and advancing care for the NF community.

•      Neurofibromatosis, or NF, is a genetic disorder causes tumors to grow on nerves throughout the body. NF can lead to blindness, deafness, learning disabilities, disfigurement, bone abnormalities, disabling pain, and cancer.

•       NF affects 1 in 3,000 people of all populations equally; there is no cure.

•       To register or for more information, visit www.nfwalk.org/sanantonio.

(© 2016 KENS)


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