Addilynne's Army Uniting

This is our 3 yr old daughter, Addilynne. At two months old our world was shattered when she was diagnosed with Spinal Muscular Atrophy type 1. SMA Type 1 is the most severe form of SMA. Addilynne is FOUR AND A HALF! What an accomplishment! She had only a 10% chance of seeing her second birthday, but she beat those odds. She’s such a fighter. Spinal Muscular Atrophy, Type 1 is her foe. Addie attends preschool this year. Because of her susceptibility to germs, Addilynne has a robot taking her place in class during the present flu season. She would much rather be with her peers, but a simple cold could soon turn into pneumonia and have her fighting to breathe/live. Given her respiratory difficulties it is much safer for Addie to communicate with her class via technology for now. The teachers and students alike are so supportive of Addie and are anxious for spring to come, and for Addie to return to school. Addilynne has a trach which helps her breathe, and she is fed through a G-tube. She endures respiratory treatments several times a day to help keep her airways clear since she is unable to cough or swallow on her own. Thanks to the injections Addie has been receiving during clinical trials for Spinraza (nusinersen), Addie IS getting stronger. She has been able to lift and use her arms and hands, she can bend and lift her legs, she can roll almost completely over, she is gaining head control, and, with minimal support, she can sit for a short while. Addie is a determined little girl! The medicine responsible for her gaining, not losing, muscle strength has just recently been approved by the FDA and will soon be available for all SMA individuals. Addie helped to prove that the medicine was safe and effective. What a trooper. While Addilynne cannot speak, she does communicate. She knows some sign language, and is starting to use a communication device. She is also quite adept at gesturing and using her eyes to indicate what she wants. She has proven time and time again that while her body may be weak, her mind has not been affected. She is very intelligent and enjoys learning new things. She also enjoys playing with the same toys and taking part in the same activities as other three year olds do. Things may have to be modified for her, but her family makes sure that this little girl doesn’t miss out on any experiences or adventures. The one thing that the family has been unable to help Addilynne with is providing her with a room of her own. For the past three years, the family’s living room has been Addie’s bedroom. It is here that Addie sleeps, plays, and has her therapies. All her machines, supplies, and special medical equipment are housed here and in the dining room. At the same time, it is also the only ‘living space’ for this family of six. Addie is completely dependent on others to bathe her. Up to this point, her mother has been bathing her in a baby bath tub in the kitchen sink. It is a difficult task, and one that gets more difficult as Addie continues to grow. She has come to expect the baby tub to tip during bathing, which causes her great anxiety. Addie needs a bedroom and a bath that can accommodate an individual with physical limitations. The city they live in is Addilynne’s home. She and her family enjoy living there. It is small enough that you know your neighbors, but large enough to have everything that you need within walking distance—schools, churches, parks, swimming pools, grocery stores, drug stores, restaurants, doctors’ offices, etc. The family has tried unsuccessfully to find another home in locally—one that has a first floor bedroom and bath, as well as a driveway large enough to get Addilynne in and out of her van, and one that is affordable. They have decided that they will have to add on to their present home, but this too is quite expensive for this single-income family. At the beginning of 2015, after hearing about Addilynne, the owner of a construction company had promised to build her a bedroom, therapy room, and bath. We met with him a number of times. He himself was a paraplegic as the result of an accident, he said. He purported to have many people who were willing to donate materials, with his company doing the labor. Unfortunately, after waiting for more than nine months for construction to begin, the man was exposed on television as a dishonest person who had faked being disabled in order to collect disability. His offer to build the rooms was also a lie. Now we are trying to raise money toward an expansion of the home so Addie can have a room of her own which is not in the middle of the family’s living space. We appreciate any and all help that we receive. If you are not able to help financially, we would love to be kept in your prayers. For more on Addilynne, please check out her page on Facebook: Addilynne's Army . Or for more information about SMA, please visit Curesma.org.