Thursday, July 26, 2012
When parents leave the hospital they normally wait for their child to get well, but for Eddie and Jill Allen of Flintstone they wait and watch as their 4-month-old daughter Faith gets worse.
Faith was born with DiGeorge syndrome, also referred to as 22q11.2 deletion, a disorder caused by a defect in chromosome 22. According to the Mayo Clinic, the syndrome can cause a wide range of problems, including heart defects, issues with breathing, the gastrointestinal tract, immune and endocrine systems, the palate, growth rate and learning disabilities.
“Neither of us had ever heard of it before,” Eddie Allen explained.
Once the ultrasounds found the heart defect the Allens began to research DiGeorge syndrome online. It is normally hereditary, but neither Jill nor Eddie are carriers. There are certain long-term effects such as learning disabilities and emotional disorders that they will not know until Faith gets older.
“We are so blessed to have her. I was worried when we found out – how her life would be different. She’s our baby, no matter what; we’ll do what we have to do to get her help,” Eddie Allen said.
Faith currently has muscle weakness and fails to thrive. She is hooked to a feeding tube 24 hours out of every day because her heart works too hard to take a bottle and is losing weight even though she is eating due to the energy that is being burned from her overworking heart.
Faith is deteriorating before their eyes. Doctors have told the Allens she won’t survive for six more months without surgery.
“We want the best for her,” Jill Allen said as tears filled her eyes. “We saw the cardiologist today and we are holding our breath that Faith will make it to the surgery.”
The Allens wait for the life saving trip as the calendar approaches to Aug. 22. They will travel to Palo Alto, Calif., located on the outskirts of San Francisco for pretesting for Faith before her surgery on Aug. 29.
Faith will have the 14-hour open-heart surgery at Lucile Packard Children’s Hospital at Stanford University. By taking the trip to California the one major surgery will allow Faith to avoid having 10 surgeries over four years, Jill Allen said.
She said one of the hardest parts outside of Faith’s illness is they have always been private people, never asked for help, and are usually the ones trying to always help others.
But the everyday expenses add up to serious figures, she said. From $150 weekly hospital visits, special formulas, medication and traveling expenses, they never imagined it would take so much to heal Faith.
Chattanooga Valley Baptist Church learned about Faith Allen from one of the Allens’ neighbors and approached the family with open arms asking how they could help.
“We saw a definite need,” Pastor Tom Brown said. “They will need at the least $10,000 to begin to meet their expenses and we are hoping to get the word out and achieve that.”
The church will hold a Faith Benefit Concert Aug. 18 at 7 p.m. at the church, which is located on 90 Nick A Jack Lane in Chattanooga Valley. The benefit will involve community singers and various genres of music. Donations must be made to the Faith Allen Fund in care of Chattanooga Valley Baptist Church and can be sent to the church or dropped off at anytime, Brown said.
“I’ve learned that the saying is true — ‘it takes a village to raise a child’ — because it will take this whole community to help her get the help she needs. I’ve found a strength I never knew I had,” Jill Allen said.