Photo by Tina Ray/Paraglide Summer Robinson laughs with her two-year-old daughter Abby in their Fort Bragg home Wednesday. Abby was born with hydrocephalus, also known as water on the brain. Abby will undergo surgery June 11, in a regional hospital and, in support, Abby’s Family is spearheading fundraising initiatives to bring awareness to brain diseases.

Abby Robinson’s favorite piece of music is the theme song from “The Golden Girls” sitcom. Two of her favorite foods are bananas and pudding. The two-year-old enjoys playing with her twin sister, Emma, born just seconds later in a regional hospital.

Abby could spend hour after hour playing with strands of beads.
Abby cannot walk. She cannot talk.
But, she can smile.

The adorable blonde was recently diagnosed with craniosynostosis, a rare brain disease marked by premature closure of sutures in the skull that could cause the shape of the head to be elongated or deformed.

The disease restricts the brain from growing properly and could lead to brain damage, said Summer Robinson, Abby’s mother. Abby will undergo surgery June 11, to reconstruct her brain and allow it to grow properly. It will be her 12th surgery.

Born with hydrocephalus, which is commonly known as water on the brain, Abby had her first surgery when she was two-days old to drain excess fluid from her skull.

“Her whole brain was smashed up against her skull. They (doctors) didn’t even think she had a brain,” Summer said.

The mortality rate for children who share the same birth sac as Abby and Emma did, is 50 percent. Summer was advised, she said, to terminate the pregnancy, but she refused.

Abby weighed seven pounds at birth, three more than her little sister and she has been fighting ever since. She also has other brain diseases, including Dandy- Walker Malformation, which is an absence of a portion of the brain.

Abby’s Family, parents Summer and Sgt. Matt Robinson of Company A, 2nd Battalion, 504th Parachute Infantry Regiment, want to raise awareness about brain diseases and direct funds towards more research to help children like Abby. They have begun the Abby Marie Hope for a Cure organization.

“We are trying very hard to raise awareness about her diseases because too many children are not properly treated and continue to suffer brain damage and never reach their full potential,” Summer said. “Too often these cases end in death.”

Summer and Matt have set up websites to keep Family members and readers abreast of Abby’s milestones. Sites have been established at Twitter, Facebook and blogspot.

The Twitter site announces that May is Dandy-Walker and hydrocephalus awareness month and it links to littledivatutus.com, an online tutu company that agreed to donate $10 for each tutu sold to Abby’s organization. Prices of the tutu range from $29.99 to $44.99.

The Facebook page encourages friends to shave their heads in anticipation of Abby’s surgery in June and to collect pledges from friends and Family that can be donated to the her foundation.
Summer said she will shave her head and has joined forces with Hooters of Fayetteville to hold a shaving party at its North McPherson Church Road location June 9, at 6 p.m.

Eric Whitmore, general manager at Hooters, grew up as a military brat. He said it is important to be community-oriented.

“We try to get as involved as we can with the community,” said Whitmore. “We try to give back as much as we can. We’re all part of Fayetteville and that’s how we look at it.”

Summer said she is looking forward to the fundraiser. Those who want to participate without shaving their head, can dye their hair pink, Abby’s favorite color, or wear a silver ribbon, which signifies brain disease.

In the meantime, the Robinson Family continues to concentrate on increasing awareness of brain diseases.

“We want to help Families so they don’t have to be in the same position as we were when we started because there is hope,” Matt said. “Many times, the question is, ‘does this get better,’ and the answer is, ‘yes, it does get better,’” he said.

“You see the Susan G. Komen Foundation, you see the pink ribbon and know what that stands for,” added Summer. “We want to raise awareness so that when you see the silver ribbon, you know it’s for brain diseases.”

For more information about Abby, visit twitter.com/abbygailmarie1. On Facebook, visit prayforabbygailmarierobinson or go to abbygailmarie.blogspot.com.