This fundraiser is for my nephew, Lennox Butler. He is a 23 month old who was born completely normal and healthy. He was developing normally until November 2022 when he began losing his motor skills. By December 5th, 2022 he was unable to walk. By January 2023, he was unable to use his hands properly, and by late February 2023 he began to stop eating and drinking normally. After two MRI's, ER visits, genetic testing, neurology appointments, genetic appointments, swallow study, and a week and a half hospital stay at Johns Hopkins Hospital, it was determined that he has a rare genetic condition called Aicardi Goutières type 6. This disease causes neurologic decline, loss of motor skills, loss of speech, irritability, and increased muscle tone. Lennox underwent a feeding tube surgery on 3/17/2023 and currently receives the majority of his nutrition through this tube.

There is currently no cure for this disease, but there is however a trial medication through a specialist at the Children's Hospital of Philadelphia (CHOP). Lennox desperately needs to see this specialist and get started on this medication so we can hopefully stop the progression of this disease. Lennox also requires intense physical, occupational, and speech therapy in order to try and regain his motor skills back and to keep his muscles from atrophying. He also needs a specialty chair and walker in order to help him be mobile.

Unfortunately, Lennox's insurance does not currently cover his specialty visits at CHOP, any of his therapies, or his formula. His formula alone costs $1,000. All of these are being paid out of pocket currently by the family. His parents both work full time and he does not qualify for Medicaid or medical assistance, but we are continuing to research our options in order to get him the assistance that he needs. In the meantime, we have come to the tough realization that we desperately need the help of our friends and family to assist us in any way possible. We are asking our village to help in any way that you can so that we can get our sweet Lennox all of the care and therapy that he needs in order to fight this disease.

We thank everyone who has reached out, already donated, and has just simply been there for the family. We truly do appreciate it and are so thankful for all of our support. Lennox is surrounded by so much love and for that we are so grateful.