Sophie Moon’s Medical Bills & Therapy Expenses

I don’t even know where to start. I love my daughter, Sophie so much! I want to provide for her everything she wants and needs. The problem is I am a single mother and her needs are more than I was prepared for. 

My daughter started showing signs of delays very early on. At 5 months she had torticollis and needed a cranial band and physical therapy. Then she started being an extremely picky eater. She was delayed walking and speaking. So we started early intervention therapy.

Around 1 year we realized Sophie’s eyes were looking cross eyed. We took her to a pediatric opthamalogist and learned she has Duane Syndrome in one eye. Her vision isn’t impacted at this point, but she needs to continue to see a specialist every 6 months to monitor her eyes and vision. 

At 2 years, she still wasn’t talking and we started speech therapy, developmental therapy, social work, and occupational therapy. I had a feeling she had autism, so we went to a specialist for testing. They recommended we do genetic testing and hearing tests to rule out other needs. 

She had frequent ear infections, at 18 months, she had tubes in both ears. So, we did genetic testing and the hearing tests. We learned her hearing was 100% fine and other than the ear infections that continued, she did not need further help for her hearing. But...

When the results of the genetic tests came back we learned she has a genetic disorder that less than 1% of the world has. It doesn’t even have a name! So the geneticist recommendation was to do more testing. We tested for childhood diabetes, which came back that she was not at risk. We tested her heart and that was honestly the hardest for me. We learned that she has several heart conditions that may or may not lead to sudden death. I was in shock. My baby could die? This was earth shattering. So we continue to see the cardiologist every 6 months to 1 year to monitor her heart. 

Then, we did the final test. Sophie was diagnosed with severe autism spectrum disorder on April 15th, 2017. She is non-vocal and engages in moderate to severe stereotypical behaviors. She has a device to help her communicate and she attends ABA therapy 20-35 hours a week. She also goes to preschool. 

So my baby girl is busy! She is either sick and at home (her genetic condition and heart makes her susceptible to getting ill frequently) or she is in school, visiting her doctors and specialists, or she is in therapy. 

I will do whatever she needs so she can continue to live a long, fulfilled life. But the problem is even though I work full-time, I can’t pay for everything she needs. I had to purchase an insurance plan for her through Obamacare, but it doesn’t cover everything she needs and we meet her out of pocket max every single year. I am in serious debt from all the years of therapy, testing, and medical bills. It has gotten to the point that I question sometimes if I can to take her to therapy or doctor visits. 

I have no savings, no retirement fund for myself, and no savings for her future. It scares me that I won’t be able to provide for her or myself. She will most likely need lifelong care.

A recent study estimates the average cost for ABA therapy for a child diagnosed with autism is $60,000 per year from when he or she is diagnosed (typically at age 3) until entering school at age 6 or 7.

Lifetime care of Individuals with Autism or those with Intellectual Disability is $2.3 Million U.S.
 
Please help us. The money that I am asking for will only be what we need to pay for this year’s therapy and the past 5 years of medical bills. It will help me to know that I can afford to give her another year. 

Thank you so much for your support!