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Hope for Rylea
By Steve Moyer
Nevada Daily Mail
She doesn't look like a pioneer, but 5-year-old Rylea Barlett is definitely a unique little girl who is on the front lines of medicine. Rylea is blind. She has optic nerve hypoplasia, a condition characterized by the underdevelopment of the optic nerve during pregnancy. Rylea's parents, Dawn and Rick Barlett, Webb City, are doing everything they can to give Rylea a chance to have normal sight.
After a rough start, a 24 and a half hour labor, Rylea was born looking perfect but there were problems, she wouldn't nurse, her eyes rolled back and she quit breathing. After checking her blood sugar and finding it extremely low she was given IV's and her glucose levels were checked frequently. It looked like the worst was over for little Rylea.
The next few months were uneventful for the most part but shortly after Rylea's first Christmas she developed a high fever and congestion. A trip to the hospital followed, and during the examination Rylea's pediatrician noticed that she wasn't tracking objects with her eyes.
Rylea was referred to a pediatric ophthalmologist and Dawn was optimistic.
"When we arrived at the office there were several children in the waiting room. Some wore glasses, some had eye patches to help correct a lazy eye," Dawn said. "I figured this may be our problem as well, a patch, a prescription for glasses and we'd be on our way."
That hope was gone as soon as the ophthalmologist looked into Rylea's eyes.
"After the examination, the doctor came back in the room and said, 'I'm sorry, your daughter has optic nerve hypoplasia and is blind. There's nothing we can do for her,' and with that said she left the room," Dawn said. "I was beyond devastation. Never in a million years did I expect to hear that our little angel was blind."
Rylea was examined by many other doctors over the next several months, all with similar diagnosis. Faith has been the family's guiding light.
"The last few years have been hectic at times but our family has continued to pray for God to lead us to something or someone who would be able to help Rylea see," Dawn said. I've researched any lead that came my way since we received the diagnosis. Many offer false hope, others are simply futuristic, like something you might see in a science-fiction movie."
Rylea's mom and dad have a ray of sunshine from an unlikely source to light their path -- Stem Cells China. The proposed treatment would take adult stem cells from umbilical cord blood and inject them into Rylea's spinal column.
"The process is similar to an epidural," Dawn said. "They don't have to go through the eye or brain."
The treatment is also new -- so new, in fact, that Rylea would be the first patient in the world with a primary diagnosis of ONH to be treated with cord blood stem cells.
"There have been other cases where ONH was a secondary diagnosis but this will be the first where it is the primary," a spokesman for Stem Cells China said.
Rylea's stay in China will involve an extensive physical examination before the treatment begins and then will undergo a series of treatments, spaced five to seven days apart. The process will involve a lumbar puncture, as in an epidural, or possibly two along with one or two IV's into her bloodstream.
Getting Rylea to China to receive the treatment isn't going to be easy and it's going to cost quite a bit, $200,000. Stem Cells China has reduced the charge by $8,000 to help out but the Barletts still need help and have reached out for it.
That's where minister Rick Greaney, First Baptist Church of Newman, Calif., comes in.
The Barletts started sending out e-mails seeking help and the word started to spread. A local broadcaster has even done a news story on Rylea. Greaney heard about Rylea through a real estate agent in Joplin.
Greaney is the nephew of Russ and Diane Milbauer, Nevada. He was thinking about moving to Missouri and had contacted the real estate agent about a house.
"Later, about two months later, she sent out an e-mail, from out of the blue, titled 'Hope For Rylea' and I read it. I picked up that they were church-going people and I started getting involved," Greaney said.
Greaney also has created a DVD of a slideshow with a copy of the broadcast by KSN news on Rylea that he is using as a tool to help spread the word about Rylea and her need for money to make the journey to China.
Greaney said he will put canisters for donations in six churches in California and speak wherever he can to help raise money.
"God's work is displayed here, there's no doubt about it," Greaney said. "There are six places that have never heard of Rylea that will open their doors to these canisters."
Dawn and Rylea will travel to China to be there the first of July and will stay through the month and leave July 30. It will take six months for the nerve cells to respond to the treatment and Dawn is optimistic about Rylea's chances.
"So far in our journey regarding China, we have been led to nothing but wide open doors," Dawn said. "From everything I've researched turning out to be all I could ask for or more to the incredible support of Rylea's eye doctor, pediatrician and nurse practitioner. There is peace within me that could never be described with words."
The family has a fund set up to accept donations at US Bank in Webb City but any US Bank will accept donations for the Hope for Rylea Fund. You can mail a donation to the Hope for Rylea Fund, 121 W. Broadway, Webb City, MO 64870.
Dawn can be reached at (417) 438-2942 or e-mail at dawn@nomoredarkness.com.