January 9, 2009, it was an unexpected yet 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 something stir inside her each time she held her daughter. She noticed that Lily remained rigid, flat like a board, her body unable to relax. Lily 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 using 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; even to the point of feeding 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. 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 eventually; 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 NG 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 a MRI scan which showed bilateral scarring of Lily’s brain indicating that Lily’s 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. Heart-breakingly, they were also warned that most marriages with special needs children end in divorce.
Early on, they received an out-pouring 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 speak the name “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 just 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 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, as well as: 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 bend and relax her rigid muscles and joints; occupational therapy to help Lily learn how to utilize her hands; Botox injected into her neck and hands to alleviate dystonia; horseback therapy to strengthen her back, neck, and improve head control; and aquatic therapy.
Due to the extent of Lily’s needs, Allyson and Scott sought out every option to give Lily the best opportunity to excel. In this process, Allyson discovered a Pre-K teacher at Mountain Brook Elementary in Birmingham, Alabama who was also a speech therapist that had transformed many special children’s lives. Allyson contacted the teacher and she drove to Destin. Surprisingly, within 1 hour, Lily began speaking her first sentence. At that moment, they knew they must make the difficult and sacrificial commitment to commute to Alabama each week in order for Lily to attend Mountain Brook Elementary. There, Lily utilizes the Tobii Eye Gaze system to learn; and, on the first day of school, Lily was able to walk inside her class just like her friends, while using the help of an Upsee 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 re-infused with her own cord blood at Duke University (second youngest person in the world). Today, cord blood stems cells are used in the treatment of nearly 80 diseases, including a wide range of cancers, genetic diseases, and blood disorders. In a cord blood transplant, stem cells are infused into a patient’s bloodstream where they go to work healing and repairing damaged cells and tissue. When a transplant is successful, a healthy new immune system has been created. There is often confusion over who can use cord blood stem cells in treatment. The truth is that both the baby the cord blood was collected from or their sibling can be treated; however, it very much depends on the condition being treated and ultimately the treating physician's decision. Scott and Allyson believe that this transplant can be a great source of HOPE and healing. For instance, your child may develop a condition called Franconi Anemia, the same diagnosis as FSU Head Football Coach Jimbo Fisher’s child. Your child could be infused with their own cord blood and can be healed. One hundred percent. It is the only cure to date.
Scott and Allyson believe that if they can 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 wisely 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.” They also believe that God has mercifully walked beside them through their storm and feel compelled to extend hope and grace to others through their storms. They encourage, “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 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, just look deeply into the big brown eyes of a miracle girl named Lillybell. All that know and love Lily are believing that she will be healed on 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 have just gotta keep dancing in the rain!