Hey everyone,

I hope this message finds you well. I’m reaching out with a heavy heart because I’m facing some incredibly tough challenges and could really use your advice, support, and kindness during this time.

I’m a mother of three beautiful kids—Kenny, my brave little ATRT warrior, and his two sweet sisters. Life with Kenny's condition has been a constant journey of ups and downs. His energy is limited due to his health, and his baseline only allows him to attend school every other day, until 1:30 PM. His seizure activity , which are pre seizure activity and absent seizures, make things even more difficult as they leave my family worried about his well-being, and unfortunately, we don’t have anyone who can step in to help watch him. On top of that, Kenny doesn’t have the energy to participate in extracurricular activities like most kids, which makes things harder on all of us.

As a result, I’ve had to step away from work a while ago to care for my children full-time, and with the outrageous costs of childcare makes that option impossible as well , it’s been nearly impossible to make ends meet. Right now, I’m living in a small two-bedroom apartment with my three kids, my ex husband, and has been in between jobs) and my dad has had to move into my kitchen just to help cover the rent and bills. The disability benefits I receive for my children only go toward their essential needs, household bills, and travel costs for appointments. Kenny’s condition requires us to travel to Boston for specialist care and Portland for emergency visits, and my middle child also has weekly speech therapy in the next city. Unfortunately, we lost our car recently due to mechanical issues, and now I rely on Amtrak and Uber to get around—both of which are costly and far beyond my budget.

Kenny’s condition is deteriorating in some ways—his recent 45-minute seizure has left him with even less energy and more fatigue, so now he can only attend school every other day. Despite these struggles, he continues to make progress in his therapies, including speech, occupational, and physical therapy. On top of everything, his hormone levels have increased, which could indicate the need for an adjustment to his levothyroxine medication to prevent premature puberty. His vision has also slightly worsened, and glasses have been recommended, but the discomfort at his shunt site has us waiting to hear back from neurosurgery about the next steps.

I know things are tough for everyone, and asking for help isn’t easy for me. I’ve always tried to figure things out on my own, but right now, I need some support. I’ve created a GoFundMe campaign to help cover some of the medical expenses, travel costs, and everyday needs that we’re struggling with. I never imagined I’d be in this position, but I also know that sometimes it’s okay to ask for help when we need it most.

I’m also hoping to find work-from-home opportunities that could help me support my family. If anyone has advice, tips, or knows of any remote jobs that could be a good fit, I would be forever grateful for your guidance.

Thank you so much for taking the time to read this, and for any support or advice you can offer. Every little bit helps and means the world to us. The goal is to eventually get another vehicle and move to a bigger place.

With love and gratitude,

Kiara