Hello, I am an only parent to a medically complex 3 year old beautiful boy. I found out about my son’s diagnosis when I was pregnant with him. He has hydrocephalus, which is a brain condition with no cure. He had brain surgery at just 4 days old. He had hip surgery at 2 years old. He still does not walk or crawl or stand, and he is completely nonverbal except for “mama”. My son has 9 therapies Monday-Friday and one of those is out of town. My son also constantly has out of town appointments with specialists.

I have been denied to receive help for my son through IHSS and still have not been approved by SSI. My son has been denied for speech therapy and denied for intensive physical therapy. His insurance wants me to go out of town just to receive regular physical therapy. My son has been denied medical equipment. I have not been able to work because it is impossible to keep a job with all of my son’s therapies. I was going back to college and had to put that on hold.

I was recently diagnosed with something due to all the stress, and my heart rate is way higher than the usual. My son’s dad walked out of his life when he was only a few months old. He was dealing with substance abuse and remarried, and has never reached out to say he got clean or anything. The county sued him for child support and they haven’t found him in years. And he also left me in debt and damaged my credit.

My son has been denied speech therapy and intensive physical therapy to be covered by insurance, but there is a wonderful place here in town that provides those two therapies. They charge almost $3,000 for each session of a few weeks, and they suggest to do that a few times a year. So that would be almost $6,000 to pay for both speech and physical therapy. Doing that 3 times a year is almost $18,000. Again, he can’t walk or crawl or stand. He only knows how to scoot on his bottom.

He is currently in horse therapy out of town, but I haven’t been able to find him a helmet for protection that fits him because his head is large and abnormal. He needs a custom made one and that costs quite a bit as well. He needs special shoes for his AFOs that he wears on his legs to help him have stronger legs. My car payment is behind. We are blessed that my son has all of his NEEDS, anything that’s necessary to live. But reality is I am desperate to get my son the extra help he needs to thrive because I feel like nobody is hearing my story or caring for the well being of my son. So I wanted to attempt another way.

Thank you for reading my story and thank you in advance for any help. God bless you.