Sight for Skyler

Published May 1, 2009
By Senior Airman Joanna M. Kresge
2d Bomb Wing Public Affairs

BARKSDALE AIR FORCE BASE, La. -- Skyler amuses herself with her toys, tries to walk, giggles incessantly when her dad plays with her and loves to cuddle up to her mom. In many ways, Skyler is just like any other 14-month-old, except she can't see.

At only three-months old, Skyler was diagnosed with Septo-optic dysplasia, manifested by optic nerve hypoplasia, which left her blind with light perception.

"I was pretty heartbroken," said Senior Airman Derek Goodwin, 2d Maintenance Squadron, Skyler's father. "I've never interacted with a blind person. I've never even met a blind person before and here I am with a daughter who can't see. I have a high performance car which I had wanted to give her when she turns 16 or graduates high school, and now I won't be able to pass that on to her."

SOD is a developmental disorder that results from a defect of normal embryological development. Symptoms of the disorder are; an under-developed optic nerve disk, pituitary deficiency and involuntary eye movements. The cause is still unknown but it is not a genetic disorder.

"We've been told by the optometrist that she has good coloring in her eyes and she has light perception, but as far as we know she can't make out shapes or anything like that," said Stormy Goodwin, Skyler's mother.

Skyler's sight isn't the only thing that has been affected by her condition.

"Because of the ONH she also has hypothyroidism so she takes a pill every day," said Mrs. Goodwin. "She doesn't produce enough growth hormone, so we have to give her an injection every night. She actually has a milder version of the ONH, a lot of kids who have that disorder also have autism and a lot of different hormonal imbalances."

Prior to Skyler's diagnosis, her parents had a feeling there might be something wrong, so they took her to see a few doctors to make sure everything was alright.

"We had suspected that something wasn't right," said Mrs. Goodwin. "We took her to a physical therapist to test her motor skills. At that point they took her on as a patient, and they soon realized that she wasn't tracking objects with her eyes and she had nystagmus, twitching eyes, which is a symptom of ONH."

After numerous tests and doctor visits, Skyler was finally diagnosed.

The initial shock of finding out about Skyler's condition, did not keep the Goodwins from moving forward.

"It was heartbreaking, but at the same time, you can't let it affect your parenting," said Mrs. Goodwin. "With that one less sense she depends on us to be there for her more. We don't dwell on it, it is what it is."

In the months since the Goodwin's found out about their daughter's condition, they continued with their daily routines accepting that their daughter would live out her life without sight. Airman Goodwin deployed to Andersen Air Base, Guam, with the 20th Bomb Squadron and returned home, as Skyler continued to grow bigger. However, recently a ray of hope shined upon the Goodwin family.

Mrs. Goodwin was on the internet researching ways to set up Skyler's bedroom to make it easier for the soon-to-be walking toddler to navigate on her own. She came to a video newscast about a family who was asking for help to pay for a procedure to give their child sight. The child had the same condition as Skyler.

After further research, Mrs. Goodwin found the source of the treatment. A study originating in China eight years ago uses stem cell treatment to restore partial sight to children born with ONH. It's a 30 day procedure, consisting of six rounds of stem cell treatment. In addition to the treatment, she would also undergo intense physical therapy, acupuncture and a variety of other treatments.

"Once I found out about the treatment I started to call news and radio stations, anyone and everyone I could think of," said Mrs. Goodwin. "It was a very emotional day. When Derek came home I just couldn't stop crying I was so happy."

Airman Goodwin was a bit more weary than his wife at first.

"My first reaction was, this is too good to be true, this has got to be a hoax," he said. "But she showed me the videos she had found, and then I thought this has got to be a miracle."

Unfortunately, since it is a study, and the treatment has not been approved by the Food and Drug Administration for use in the United States, the Goodwin's insurance is not covering any of the treatment cost. The cost of the trip and the treatment will total close to $40,000.

"At the moment I saw those videos, I knew it wasn't a matter of if we were going to do it but how we were going to do it," said Mrs. Goodwin. "It doesn't matter if we had to come up with half a million dollars or $40,000, it might take a little longer, but you can't put a price on giving your child sight."

As soon as they found out about the treatment, the Goodwins began to pour all their extra money into the Sight for Skyler fund.

"We had a pretty large tax refund this year, so that went into Skyler's account, and all the special occasion money we get from family goes there as well," said Airman Goodwin.

"We've made a lot of lifestyle changes as well," added Mrs. Goodwin. "We've had to cut back on a lot of things that aren't necessities."

Along with putting all their own money into the account, the Goodwins began spreading the word about Skyler to anyone who would listen. They appeared on television news stations and appealed to base organizations requesting help to give Skyler sight. One organization that was quick to offer it's assistance was the Barksdale Enlisted Spouses Group.

"I received an email for the BESG from the Goodwins," said Rachel Penwell, BESG president. "After hearing their story we just want to help out as much as we can."

Not only has the BESG started a Web site for the cause, but they are donating money from their own funds and organizing fundraisers.

Even with all the help they are getting, the Goodwin's are a long way from their $40,000, but for the moment they are grateful to have each other and for support of the Barksdale and local communities.

"We just want to thank everyone for the past and continued support," said Airman Goodwin. "No matter how small we are so grateful for the help people have provided, every little bit helps."

"I was so overwhelmed when we started to get donations, I looked up each contributor in the white pages and personally thanked them from the bottom of my heart," added Mrs. Goodwin.

To find out about upcoming fundraisers contact the BESG by email at barksdaleenlistedspousegroup@hotmail.com. For more information on Sight for Skyler, visit the Web site: http://sightforskyler.webs.com/.