The compelling story of Scott, Allyson, and Lilybell Runnels
January 9, 2009 was an unexpectedly joyous day. Lily Isabella Runnels arrived into this world one month prematurely, surrounded by her loving parents and family. Scott and Allyson were overjoyed to bring their precious baby girl home; yet quite soon after, Allyson felt unease stir inside her each time she held her daughter. Lily remained rigid, flat like a board, her body unable to relax. Lilybell was having extreme difficulty feeding. She simply could not eat and would not stop crying. Physically, mentally, and emotionally exhausted, they called or visited their pediatrician each and every day looking for answers. They were told that perhaps Allyson was not making enough milk, try pumping and use a bottle, try formula just in case Lily was allergic to breast milk, or go for a walk or a drive. They tried everything, but Lily’s feeding did not improve. It only got worse and worse, to the point they had to feed her with a dropper.
Allyson was told that she needed to not worry so much and get some sleep. She was just a nervous and inexperienced new mother, she was told. Well-meaning people told her to relax and the baby would relax and that it was probably just colic and she would grow out of it. But, a mother knows. Lily would neither eat nor sleep and could not be soothed. Scott and Allyson, alongside their supportive parents, traveled throughout the country seeking the help of pediatric gastroenterologists and specialists. Doctors placed an feeding tube in Lily’s nose; however, the tube would often come out which would cause Lily to aspirate from the fluid escaping into her lungs. Finally, four months later on July 4th, doctors relented and allowed Lily to have an MRI scan. The scan which showed bilateral scarring of Lily’s brain indicating that the middle-cerebral arteries in her brain had not developed properly. She had suffered a stroke in utero during the end of the second trimester which led to Periventricular Leukomalacia, resulting in Cerebral Palsy.
Nothing prepares a mother and father for devastating news like this. They finally had an answer, although it was not the answer they were hoping for. July 4th marked the beginning of their painstaking journey, not toward independence, but rather Lily’s total dependence on them for her survival. Scott and Allyson were advised that Lily would never walk, talk, eat, or develop as a normal child. She would require a feeding tube placed directly in her stomach and could possibly face countless surgeries and procedures. Heartbreakingly, they were also warned that most marriages with special needs children end in divorce.
Early on, they received an outpouring of prayers and support from friends and extended family; nevertheless, as time passed and life continued, people returned to their own busy lives. So they learned to hold tightly to one another and lean on their faith in God to strengthen and sustain them. Some days were better than others. For the first two years, they could not even say the words “Cerebral Palsy.” Sadly, when they took Lily to a restaurant or grocery store, people would often stop and stare at Lily’s special stroller or wheelchair and rudely ask, “What’s wrong with her?” Tough, tough question. Too hard to answer. Sometimes, it was less stressful to stay home. It was difficult for others to truly understand what they were walking through. This felt isolating at times, yet they purposed in their hearts that they would continue to be thankful for what Lily was able to do rather than what she was not. Developmental milestones were going to be different than for other children. Every word spoken, every morsel of food swallowed, every movement of her arms and legs was a milestone.
As Lily grew, so did her special needs. Lily required a feeding tube which had to be surgically placed in her stomach in order to provide adequate nutrition, cord blood stem cell infusion at Duke, orthotics, leg braces, and a cast for a broken leg, speech therapy to help her learn to suck, swallow, and speak, physical therapy to help her rigid muscles and joints relax and bend, occupational therapy to help her learn how to hold objects in her working hand, Botox injected into her neck and hand to alleviate dystonia, special needs horseback riding lessons to strengthen her back, neck, and head control, and aquatic therapy.
Due to the extent of Lily’s needs, Allyson and Scott sought every option to give Lily the best opportunity to excel. In this process Allyson learned of a pre-K teacher at Mountain Brook Elementary in Birmingham, AL who was also a speech therapist and had transformed many special children’s lives. Allyson contacted the teacher, the teacher drove to Destin and within one hour had Lily speaking her first sentence. At that moment they knew they had to make the difficult and sacrificial commitment to commute to Alabama each week in order for Lily to attend Mountain Brook Elementary mainstream special needs class. There, Lily utilizes an eye-navigated computer software program to learn and is thriving. Most importantly, on the first day of school, Lily was able to walk inside her classroom just like her friends, while using the help of a walking device attached to her daddy’s legs. That day, she felt special, not special needs.
Scott and Allyson, alongside their faithful families, have learned to celebrate every victory and overcome each defeat. Their journey has led them to establish LilybellHope.org, a non-profit foundation for cord blood stem-cell banking. Lily was the second youngest person in the world to be re-infused with her own cord blood at Duke University. They believe this is one of the many blessings bestowed to Lily and want to help other families bank their cord blood. They believe that if they help one person see that they are not defined by their circumstances, then everything they have been through and will continue to go through is with His purpose. They share that “At some point in life, we are all going to be struck from a storm and caught in the rain. The question is ‘What do you do?’ God wants to use us to help others even when we are in the midst of going through our own hard times. God wants to shed light in our darkness to help others and be the light of the world. The most important thing we can do is SOMETHING. Everywhere you look, people need help. Compassion is our mission even if it is the last thing we do.” Scott and Allyson believe that God has mercifully walked beside them through their storm and feel compelled to extend hope and grace to others through their storms. It is easy to give up, but don’t. Hold on to HOPE, because storms have a way of separating us from God and each other.
Lily will be turning six this month. She loves school, learning, laughing, Nutella and most of all, she loves people. Her smile is true. Her laughter brings you to tears. Her love melts your unbelieving heart, and her hope moves you to make your own life count. Anyone who yearns to experience a glimpse of the unconditional love of God can just look deeply into the big brown eyes of a miracle girl named Lillybell.
All who know and love Lilybell are believing that Lily will be healed this side of heaven, but if the healing does not come, they trust that Lily’s miraculous life will bring an ongoing message of hope. You just gotta keep dancing in the rain!
Please visit Lilybellhope.org to find information on how you can help the foundation.