CUMBERLAND — Christmas is a special time of year, and for one area family it has already proven to be a season of joy, miracles and most importantly, hope.

Ronna Reid, of Rawlings, is a recipient of the inaugural BRAVE Award for her selfless and devoted care to her disabled daughter, Amanda. The awards program is sponsored by Shire, an international specialty biopharmaceutical company that honored nonprofessional caregivers.

Each day, countless individuals devote their time and attention to caring for members of their families in need and Shire representatives felt compelled to create a program to honor those special people.

Ronna is the primary caregiver for Amanda, now age 25.

At the age of 3, Amanda was diagnosed with Rett syndrome, a debilitating disorder of the nervous system. Rett syndrome is estimated to affect one in every 10,000 to 15,000 babies, primarily girls.

Ronna said she began to notice Amanda regressing in her skills when she was about 18 months old. After some initial testing, Amanda was diagnosed with autism and cerebral palsy, but Ronna was not convinced.

She continued to seek the opinions of neurologists until she was put in touch with a doctor who specialized in cases of Rett syndrome. After just one visit, he determined that the genetic disorder was causing Amanda’s backward slide. Since that time, Ronna has dedicated her time to providing the best possible care for her daughter, who was born on Christmas Day.

Caring for Amanda is a full-time job for Ronna, but one she would not give up under any circumstance.

“I could never allow anyone else to care for my Christmas angel. As long as I am able, we will be together,” she said.

Caring for Amanda has taken its toll on Ronna, as she struggles with chronic joint and tendon problems. She is currently recovering from wrist surgery and is undergoing physical therapy to avoid doctor-recommended surgery for her shoulder. Despite her own issues, Ronna said every decision she makes is based on the outcome for Amanda and their combined fight against what they refer to as the “Rett monster.”

It was this devotion and fierce determination that caught the attention of the selection committee. Ronna was among 400 nominees from seven countries considered by the committee. The committee viewed the nominees based on their personal demonstrations of the ideals of the Shire BRAVE philosophy — respect, courage, dedication, impact and patience.

In a press release, Angus Russell, Shire CEO, said Ronna “has shown true courage and selflessness in caring for her daughter and is fully deserving of this recognition.” A Shire spokeswoman said Ronna’s story was among the most compelling reviewed and that the selection committee was “blown away” by Ronna’s selflessness.

Ronna said the monetary portion of the award is “life-changing” for her family. She has a total of four children, including: Amanda; Rebekah, 13; Eddie, 15, and AJ, 17.

Ronna said the prize will allow her to give her children a special Christmas and purchase equipment that will aid in Amanda’s care, including a special mattress that will help prevent her from developing bed sores.

A portion of the award will be used to take her family to Disney World next year. Amanda’s delight in the prospect of a trip to Disney World was evident as she began to grin widely during the discussion of the planned trip.

The new year offers many prospects for this family. Amanda and her mother are awaiting final Medicaid approval for an eye-gaze communication system. This computer program will allow Amanda to communicate through blinking.

Earlier this year, Amanda was enrolled in a trial program with great results. After just one use, she was able to communicate her thoughts and feelings. So comfortable with the equipment, Amanda used it to perform a testimonial at her church, wowing members of the congregation with her ability to recognize people and “speak to them.”  

Those special church friends and neighbors as well as the local office of United Cerebral Palsy comprise Ronna’s invaluable support system. It was one of those neighbors who nominated Ronna for the award. Ronna said she never really considered the possibility that she could be a finalist until she received a call from the Shire company asking for additional information.

“That is when I began to think, why would they need more information if they were not going to pick me,” she admitted.

Afraid to dream that she might be actually be a winner, Ronna said the final call, notifying her that she was a winner, left her dumbfounded and momentarily speechless, but she recovered quickly, knowing that this prize will allow her to improve Amanda’s quality of life.

For more information on the awards, visit www.ShireBRAVEAwards.com.     “We believe this new year will bring more good things to our family and a voice for Amanda,” added Ronna.

Contact Angie Brant at abrant @times-news.com.