Sometimes the very definition of one’s name is a perfect description of who they are. The dictionary defines Alivia as powerful—a courageous and bold person who is action-oriented and strong-willed.
Though she is only a toddler, in the case of Alivia Tripp this definition of character most definitely holds true. Here is her story as told by her loving mother Amanda Whitener-Tripp.
At age 1, Amanda’s youngest, Alivia, was diagnosed with a terminal disease called Spinal Muscular Atrophy (SMA). SMA is a genetic disease affecting the nervous system and voluntary muscle movement. One in 40 people are carriers and both parents must be carriers for the child to be born with SMA. One of every 6,000 live births is affected. SMA is the #1 genetic killer of children under 2 years of age.
Since birth Alivia displayed delayed muscle development, which is not uncommon even in healthy infants. As each developmental stage came and went, Amanda and her husband watched as Alivia failed to reach her milestones. She couldn’t hold up her head, roll over or do other physical things that other children her age were doing. After months of pleading with their pediatrician to take a closer look at their situation, Alivia was sent for an MRI to rule out fluid on the brain. A neuro-muscular disease was the farthest thought from her parents’ minds.
It was January 31, 2014, a day Amanda will never forget. A neurologist delivered the news. She and her husband learned their baby daughter had type 2 SMA and the life expectancy ranged from a few months of age to well into adulthood. “We learned that day that Spinal Muscular Atrophy would take away Alivia’s ability to sit, crawl, stand, walk, eat, even breathe on her own,” said Amanda.
At the time of her daughter’s diagnosis, Amanda was seven years into her job with IVC US Inc.—one of the largest luxury vinyl flooring manufacturers, based in Dalton, Ga. She took great pride in her work in the IVC US customer service department and was well-respected by her peers and superiors. Amanda handled inbound customer service calls, managed and organized truckloads, filled and filed orders, worked reports and took responsibility for other tasks.
Though she once loved her work, after the devastating news Amanda found herself struggling to get through her days because she longed to be home with Alivia. She feared her child would pass at any moment and she would not be with her. The stress took a toll on her relationships at work and at home.
Though money was a big issue, Amanda did not want to become a burden at her company with frequent absences. Realizing her daughter’s incredibly fragile condition and need for round-the-clock care and constant medical attention, there was no question she needed to arrange for a more flexible work schedule. In June 2014 Amanda’s team was devastated to learn her news and impending plans to resign. The CEO Xavier Steyaert, human resources director and Amanda’s direct supervisor met with her and together they brainstormed what it would take to make it possible for her to stay. It was at this meeting that Mr. Steyaert shared information with Amanda about an organization that could change her family’s lives—the Floor Covering Industry Foundation (FCIF). Mr. Steyaert was a board member and supporter of FCIF. He explained that the Foundation helps people like Amanda and her family within the flooring industry who are in need of assistance.
Amanda first reached out to FCIF in October 2014—10 months after Alivia was diagnosed. Though Alivia was insured through Amanda’s policy at work, it did not come close to covering all of the medical expenses that were piling up and it did not cover many required procedures and equipment at all.
The foundation helped by making it possible to pay off an accumulation of bills for therapies, equipment, medicine and doctor visits that were not covered by Alivia’s health plan.
“FCIF made it possible for my family to get through very challenging times,” Amanda stated. “It was stressful for every one of us, and if it hadn’t been for the help we received from the Foundation we might not be together today.” Amanda added, “We are beating the odds now and refuse to become a statistic.”
Amanda feels she would have lost everything if FCIF had not stepped in to help her and her family in their time of need. “Nearly six months ago, my husband had an accident himself and was out of work for four months…two of which we had no income at all because I was no longer working. Without the Foundation, we’d be over our heads in debt for medical equipment. My daughter also wouldn’t have gotten the therapy she needs weekly to maintain her range of motion and some of the little strength she has left.”
“Since my daughter’s diagnosis and after we received assistance from FCIF, we’ve become more educated on Alivia’s condition by attending conferences and joining support groups. I now know and feel confident that my daughter can and will live a long and happy life, because I will do all things necessary to care for her properly. The Foundation helped remind our family that no matter what we are facing and no matter how hard the journey may become, we can find a way,” Amanda continued.
Thanks to financial assistance from FCIF, Amanda was able to get Alivia into a clinical trial for a drug that is in the final stage of research before going to the FDA for approval. The family travels from north Georgia to Orlando, Fla., for each treatment in the trial. “I feel so blessed and thankful for the help we received at a time when we needed it most. My little Alivia is now part of something that could potentially keep her healthy for a long time, while also helping advance science for the entire SMA community,” Amanda stated.
FCIF was founded in 1980 by several prominent industry figures, led by the late Walter Guinan. The foundation is dedicated to providing financial assistance for floor covering industry professionals who experience catastrophic illness, severe disabilities or other life-altering hardships.
The FCIF treats all of its grant recipients confidentially. The only reason the Tripp family’s story is being told here is because they chose to go public. Amanda hopes to show her appreciation to the organization and give it a human face so others may be aware of its extraordinary efforts.
“It is so nice to know there are people who still care even though I am a complete stranger to them,” Amanda stated. “My dedication to the floor covering industry paid off when I needed it the most.”
Since its founding, the FCIF has granted more than $4 million to help those in need. Beneficiaries include retailers, installers, retail salespeople, distributor personnel, mill employees and executives. The Foundation ensures these philanthropic efforts are accomplished with compassion, confidentiality and preservation of dignity for the individuals concerned. Financial help is viewed as an opportunity to say “we care” to those in our industry.
For more information on the Floor Covering Industry Foundation or to help members of our industry family like Amanda Whitener-Tripp cope with life-altering hardships, please visit www.fcif.org.