LOCAL PROFILE: Sawanda Spinks, President of Georgia Pediatric Hydrocephalus Foundation | Health
ATLANTA – Sawanda Spinks was eight-months-pregnant when she learned her first child would be born with hydrocephalus.
“I had never heard of it; I didn’t know what it was but when I heard the risks, I started crying; I couldn’t take listening to that”, she said.
Spinks had gone into the emergency room for a pulled muscle but when she left her life was changed, forever.
Hydrocephalus is a condition that affects 1-in-500 infants. The condition, also known as having “water on the brain”, happens when fluid accumulates on the brain and in the skull cavities.
As any first-time parent would Spinks visited countless specialists, searching for good news, before she would give birth to her son a month later; she heard none.
“Doctors didn’t give us much hope but they were doing their job, they’re supposed to tell you the worst case scenario”.
“We heard it all. They said that he would have a very low quality of life; they said he would suffer through life. If my doctor had detected this condition three months earlier they would have recommended that we terminate the pregnancy”, Spinks explains. “They told me I wouldn’t be able to carry him full-term; we didn’t know what to expect”.
One month later, Spinks delivered her son Ezekiel. In her first couple of months caring for him, other than Spinks’s doctors, she didn’t know where to turn for advice and support.
In an act of desperation, Spinks turned to the internet. “I got a lot of support on the web but I still didn’t have local support”. However, she held on to the only connection she had to parents who were dealing with similar situations.
She took it upon herself to champion the case for a hydrocephalous cure, all the while, becoming a local voice for condition. Her voice caught the attention of the Pediatric Hydrocephalus Foundation, which is a non-profit organization that works to “educate the community by raising the level of awareness about the brain condition” however they didn’t have a Georgia chapter.
“I just needed support; we talked to each other about doctors, procedures and cures. We provided each other with moral and emotional support”, she says about the online hydrocephalus community.
In 2010, Michael Illions, founder of the Pediatric Hydrocephalus Foundation, e-mailed Spinks and asked her start the organization’s Georgia chapter and act as the president and Spinks obliged.
She has served as president of the organization for two years. The group meets bi-monthly at a Cobb County library and they're thinking about holding meetings via Skype in the future to incorporate more people.
Now, almost three years and seven surgeries later, her son, Ezekiel is walking, talking, smiling and doing things a typical three-year-old does and she’s still a champion for a hydrocephalus cure.
She says, “He developed like a normal kid would, some things just took longer”. Although he still works with a speech therapist and has to wear glasses because of vision problems sustained from his condition, she thinks he’s come a long way and wants to use her success to inspire other parents facing the same types of situations.
This weekend, parents of children with hydrocephalus and organization members will unite, in the name of a cure, on Saturday for the First Annual Georgia Pediatric Hydrocephalus Foundation Walk. The event is the first of its type in Georgia.
Walkers will be split into teams named after children involved in the organization. After the walk, the event will feature live music, a dance contest, a DJ, door prizes, a raffle and lunch. The event is being sponsored by: Chick-fil-A, who will provide food and prizes; Herzing College, who will provide water for all walkers and by Wal-Mart and they’ll be providing different prizes.
The event is being held in an attempt to raise awareness for the incurable condition. Spinks wants to raise, either $1000 or have, at least, 100 people attend the walk. “We just want to raise awareness”, she said.
Proceeds from the raffle will go to research for a cure and monetary support for organizations that support the condition. “Were just trying to have fun and find a cure”.
“We think that if we meet our goals, we can fund research into a cure”, says Spinks.
The event will be held at the Georgia International Park on September 17 from 11 until 4:00 p.m. The park is located at 2300 Highway 138 S.E. in Jonesboro.