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Courtesy photo Chloe Goss and her parents, Sara and Justin, are preparing to travel to China for a special treatment for Chloe's rare disease.

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published: Sunday, January 22, 2012

'Incurable is not in our vocabulary'

By SAMANTHA GHOLAR

sgholar@newssun.com

WAUCHULA - Chloe Goss isn't an ordinary toddler. Her little body has to work overtime just to share a sweet smile with her mommy or daddy.

Diagnosed with a very rare disease known as Pelizaeus-Merzbacher Disease (PMD), 1-year-old Chloe's parents, Sara and Justin, were recently told that the disease is potentially terminal.

Chloe's disorders (circular nystagmus and Auditory Neuropathy Spectrum Disorder) cause her to be unable to see and hear properly. The conditions stopped her growth, causing little Chloe to be unable to hold her head up, crawl, stand, sit or roll over.

"We have been told that she may never walk. Each time, the news is even more devastating and each time I cry myself and Chloe to sleep, searching for answers," Sara Goss said.

Chloe was taken and admitted to the Miami Children's Hospital for two days in November where she underwent days of extensive testing. It was then that the Goss's were given the diagnosis.

"'Incurable' is not in our vocabulary. There are new studies taking place all the time - we just need to find something, anything, that will help Chloe to fight long enough to stop the degeneration," Goss said.

Currently, little Chloe is looked after by her grandmother. While Sara and Justin work full time to offset the medical bills and save for their daughter's treatment, Chloe undergoes routine therapy throughout the week to help improve her skills.

"My mother-in-law is with her during the week. She takes the directions of the therapists. The PTO (physical therapist assistant), the OTA (occupational therapist assistant) and the speech therapist all worked with her throughout the week," Goss said.

Each of the therapists visit Chloe in her home with the exception of the speech therapist. According to the doctors and therapists, Chloe is only on a three- to four-month-old level in most of her motor and speech skills.

Goss sincerely believes that the hardest thing a parent will ever have to do in their lives would be to bury a child, and Goss simply refuses to do that with their daughter. Doctors concluded recently that a certain treatment could possibly save Chloe's life and the Goss's have spent every waking moment trying to prepare for the possible miracle.

The cost of the treatment is $26,300.

"We almost have enough to cover the treatment," Goss said. "The total amount we need is around $35,000."

Chloe's treatment must be done in China. The precise procedure would have to take place overseas to ensure Chloe has the best medical team possible. The United States has yet to begin performing the procedure for that the disease. The one drawback is coming up with all the funds.

"Our deadline is in April. We have to come up with the money by then. The total includes flight, boarding, food, everything we would need to be there for 30 days for follow-up care," Goss said.

The Goss's continue to do all they can to raise the funds to get Chloe to China for her treatment. The family and friends have set up several fundraisers in hopes of collecting the remaining funds for their trip and the procedure.

A barbecue fundraiser will be held from 5-7 p.m. Friday, Jan. 27 at First Christian Church in Wauchula. Cobb Construction will host a yard sale in the Goss's honor on Feb. 4, and at 7:30 p.m. Friday, Feb. 10, First Christian Church will host a concert featuring Heather Williams.

For tickets to the upcoming fundraising events contact Goss at 773-9243.

A trust has also been created at MidFlorida Credit Union. Any contributions can be given at any of the Highlands County branches. Contributions should be made to the Chloe Goss Trust.

For more information regarding Chloe's condition or to donate visit www.youcaring.com/ and type in "Chloes journey" in the "find a fundraiser" search box.