My name is Ayden. I’m 15 years old. My mom has a genetic condition called TANC2 Related Diseases, and it has caused an aggressive demyelinating disease, similar to MS but extremely aggressive. The doctor told us she only has so many years left, and this past year it has gotten a lot worse. Her swallowing is getting harder for her, she forgets basic words and walking can be tough sometimes. She has episodes of extreme fatigue. The doctors are working their best to help stop this but stress causes the lesions to become more aggressive and it’s causing her IVig to not last as long and not to be as effective. Because of that, she can’t work. She does odd jobs to help try to support our family, but it is tough. It is just me, my brother, and my mom.

We had to move in 2020 because my brother's health condition was getting worse, he has the same genetic condition as my mom. But couldn’t wake up anymore, and she had to drain any savings she had to move our family. It has been a struggle to get by, but we have managed through our mom’s continued effort. This past year, has been exceptionally hard- my brother and I have the same genetic condition as my mom and we have been hospitalized many times especially in 2025 and now 2026. I have been in the hospital every month for 1/2 the month since October, and my mom has been by my side. Both my brother and I have been on home hospital schooling most of this school year- we have been too sick to be in school. My brother has extreme hypersomnia caused by our genetic condition, he started to lose his vision, and had horrendous eye pain. I have had CDiff, autoimmune issues, severe blood pressure drops from Dysautonomia and recurrent SiBO. My mom has been our full time care giver 24/7 and she doesn’t have anyone to care for her and she hasn’t had a break, it’s been relentless. She has worked tirelessly to get us to the right medical specialists, she has argued for access to treatments that have never been used- she has had to come up with copays for medicines that cost thousands, all to figure out how to protect us from having a progression of this disease as best she can. it’s been round the clock exhausting work even for someone in the best of health. But now it’s time we protect her. I want to take stress off my mom so she has a chance to not lose her swallowing completely and relieve some of the financial burden from basic bills. I’m not asking for a lot, just anything that could help. 

And NO, we have not told her we are doing this but we know how much it would mean to her.