Saving Lillian Bay
Written by Jessica Hobbs
Photos provided by Brand Eleven Eleven
It seems that we are living in a world where some will espouse the idea that people are becoming more and more disconnected from each other; communities are fractured and no one talks to their neighbors anymore. However, a small community of family, friends and strangers came together to raise funds, support and offer compassion for the family of a little girl with a very rare and serious disease. Through the dedication and perseverance of a family and one strong little girl, they were able to beat the very low odds. This is the story of Lillian Bay Beatty and her parent’s, how a group of thousands of people came together for one common goal and how everyone’s support made miracles happen. This book brings to light the journeys through this miraculous story and hope to others by raising awareness.
“Millions of dollars, endless prayers, and several miracles were needed to save her life. She did not understand medical reports, or the odds of living. She has not been on this earth long enough to grasp the idea of fighting with all her strength.” Saving Lillian Bay, written by Ron Knight, is a story of Lillian’s obstacles in which she had to overcome, starting before she was even born at All Children’s Hospital in St. Petersburg, Florida, to numerous surgeries that followed, and the amazing amount of support and love that she and her family received during this time from local community members of Boca Grande, UPS, and All Children’s Hospital.
Before her birth, Lillian’s parents were told she had Cystic Hygroma, a rare and little known disease that causes facial and tongue swelling. Lillian could not breathe or eat on her own, resulting in over twenty surgeries, endless medical expenses, and surmounting stress and endless prayers. Lillian was fitted with an endotracheal tube to help her breathing, along with a feeding tube. Other surgeries included removing portions of the Cystic Hygroma.
The spirit of Saving Lillian Bay embodies that of little Lillian herself and the community members who donated money for medical costs, and precious time to support the family’s needs. This included a spaghetti dinner, held by Boca Grande Community members that raised $12,000, numerous donations into the Lillian Bay fundraising account, local businesses donating items to be auctioned, a fishing tournament that raised $5,000, and even travel arrangements for Lillian’s parents to the hospital.
Brad Beatty, father of Lillian Bay, is a courier for UPS on Boca Grande. Even with his excellent health insurance coverage, he was still unable to pay all of Lillian’s mounting medical bills. The small community of Boca Grande knew of the family’s plight and made any effort they could to help. “Gifts poured in for the nursing staff that was needed 24 hours a day, sent by stores from Boca Grande. The nurses received beach purses, note cards, candles, scarves, and other items. This would become a common theme of Boca Grande.” The residents and businesses wanted to show support for the family and medical professionals that worked countless hours for Lillian. The Boca Grande Fire Department joined in and gave gift cards and presents to the family instead of exchanging gifts with one another one Christmas. A waitress donated all her tips after working at one of the fundraisers. The Island of Boca Grande became an example of a community with an endless amount of love, provision, and a passion to help. While Brad worked his UPS route through Boca Grande, he would update people on Lillian’s progress and they would offer their words of support and prayers. “Brad felt like the entire Island of Boca Grande was literally in the back of his UPS truck. They were with him on every stop, every delivery, and every step he took.”
One resident in the community arranged an appointment for Lillian to have a second opinion with talented doctors at the Children’s Hospital of Philadelphia. That is when Lillian’s parents heard for the first time these words, “We can help her.” The commitment and love that came from everyone involved was staggering. The result of that commitment and love became the reason Lillian is still alive today.
Family friends also came to the rescue, taking care of their home while they were in the hospital and offering spiritual support to Lillian and her parents during their darkest moments.
Today three-year old Lillian has the energy of any other young child. Ninety percent of the Cystic Hygroma has been removed from Lillian, along with the trachea and feeding tube. She loves using her talent for painting, creating works of art, and enjoys going to the beach. She has come so far from where she began, less than three years ago. Her optimism and joyful demeanor, encourages others around her to triumph over life’s difficulties. Lillian is an example of courage. And the community support is an example of shared love and kindness. Her parents are an example of relentless fortitude. And this family’s story is not complete without the mention of a community with impressive character.
Very little is known about Cystic Hygroma. Often times, parents are recommended to terminate the pregnancy if Cystic Hygroma is diagnosed. The odds for a baby’s survival are extremely low and the medical costs are overwhelming. However, Lillian Bay is living proof that miracles indeed happen.
A companion children’s book, Miracles Happen: The Saving Lillian Bay Story, has been created so that children going through a difficult time may be inspired with hope and given the strength to continue fighting their disease, or illness. The book is geared for children in first through third grades. As a bonus, it is written in a way to build confidence with the child’s reading skills.
Brad Beatty, along with author Ron Knight and publisher Brand Eleven Eleven, hope to share the message of Lillian Bay, while creating the funds necessary to raise awareness and help families that are going through a similar situation.
The cost for the adult version of Saving Lillian Bay and the children’s version of Miracles Happen: The Saving Lillian Bay Story, are $10 each. A portion of the proceeds will go back into a trust for Lillian, along with the continued research for Cystic Hygroma. For more information about Lillian Bay, Cystic Hygroma, or to purchase these inspiring books, visit www.savinglillianbay.com.