ELLA LANAY HUNT
Ella is the youngest of three and the first girl in our family. She was born a typical baby and had no signs of any neuromuscular illness. At about eight weeks of age it appeared that her legs stopped moving. Within the next few weeks it became obvious she was getting weaker, not stronger. At four months old, we were given the devastating news that Ella had Spinal Muscular Atrophy (SMA is a fatal neuromuscular illness that prevents Ella from developing muscle tone). SMA ends a child's life before the age of two, with the majority of the children dying by the age of one. The treating hospital informed us Ella would pass within six weeks. "Take her home and love her, she will die in her sleep or die in your arms".
We had a very disillusioned 3-hour drive home. It was in that drive that we decided that we would refuse to go home and just let Ella "die". We decided that Ella's life was going to be amazing no matter how short her time on earth would be. We booked a trip to the happiest place on earth...Disney World, and left six days later. That is where the story truly began.
On this trip we realized that we are ALL terminal and we should learn to live in abundance every single day. Hence the phrase "Everyday. Live. Life. Abundantly. E. L. L. A".
The journey has not been easy. We have spent countless hours researching medical interventions that would help to save Ella's life. We have used our voices for advocacy, we have had to resuscitate and stabilize our baby girl more times than we can count, we have become honorary nurses as we have learned specialized care for Ella's disease and we have battled for the many needs of adaptive equipment to match her growing body.
SMA does not affect the mind, only the body. Ella is a typical five-year-old little girl with typical five-year-old dreams. She loves people, loves to have friends over and every day wants to experience some kind of an adventure. Those who are able to spend even a small amount of time with Ella are blessed by her amazing strength, courage and adventurous spirit.
As Ella grows, her needs grow with her. Currently Ella is in need of more space to be able to have consistent therapies as well as a place for her classroom. Due to germs, we are unable to take Ella into the classroom so she does her studies through a robotic telepresence called a VGO.
We are creating a classroom and therapy space in our basement and are in need of a platform/incline lift for the stairwell. This lift will allow us to put Ella in her wheelchair and send her safely down the stairs (a weak airway and stairs do not get along and airway occlusion is a constant challenge). In addition, the lift will allow us to handle emergencies due to the weather. We will be able to get Ella down the stairs with all of her equipment in a safe and timely manner.
Ella cannot sit up or hold her head up. Therefore, a traditional stair lift system is not an option and a specialized platform lift must be designed. The cost of this lift is much higher than the cost of a standard chairlift. It is estimated that the total cost of the lift system will be approximately $9,000.
As a family of faith, we certainly know that God is in control and has shown that through His continued provision. Without your support this journey definitely would look very differently. We thank you from the bottom of our hearts and are eternally grateful.