Sarah & Chris’s Story

My son, Chris, was diagnosed with severe Hemophilia A in 2004 at 8 months old following a muscle bleed in his left arm. While terrified, we were lucky to have access to treatment and were embraced by the bleeding disorders community. The HTC team summed it up when they told us he had hemophilia, saying “We know this is scary, but it’s the best diagnosis of all possibilities – and you’re not alone. We’ve got you.”

Mental health diagnoses, treatment, and support often isn’t like that at all. Our journey into this world began with a referral from Chris’s pre-school to be tested for ADHD. Over the next few years, that diagnosis was followed by mood disorder and oppositional defiant disorder, which were treated with a variety of medications and therapy. Life was up and down but manageable until the 6th grade when the combination of puberty and intense academic and social pressure pushed him to the brink.

He began to deteriorate mentally and had frequent outbursts like the one that put this hole in our wall. By the summer, he had spent two nights in the county psychiatric hospital after punching me in the arm. We worked with his mental health team to figure out what to do next. His psychiatrist said, “If you can keep him out of the criminal justice system, you will be doing a good job as parents.” Knowing there was a bright, funny, curious, and strong boy beneath this behavior was heartbreaking.

The consensus was that Chris needed a residential school that would provide him with intensive mental health support. I called a facility that looked like it might be a good fit and they told me, “We aren’t equipped to treat a student that needs IV infusions to prevent bleeds due to hemophilia. Nor can we ensure he will be safe from possible injuries while here with that diagnosis.” I was shocked that they would deny him because of his medical condition. His social worker and I made calls to over 50 other residential facilities approved by the state to treat children like my son. All of them denied him access because of his bleeding disorder. We were finally able to convince one residential program that was located near the hemophilia treatment center, to admit our son. They agreed to “let” us send a private nurse to do the infusions 3x/week. Unfortunately, the facility was not a good fit. During the 8 months that he was there, his condition got even worse and the program decided that they could no longer serve him.  

We started the process to find another, hopefully better, placement for him. After denial after denial, we eventually found one other program that would consider him with IV treatment –but it was 7 hours away in a very rural community. When Chris and I visited it was clear that it was not a good place for him. Out of other options we decided to keep our son at home and he attended an intensive day program. With his extreme outbursts, anxiety and depression, this program was not the most appropriate treatment for him, he needed to be in a residential treatment program. But because of his bleeding disorder, it was the only choice available to us. Six years later, Chris is stable but it has been an incredibly difficult journey for our family. I felt so hopeless having door after door slammed in my face. Chris deserved better. He deserved to have the same access to mental health treatment that everyone else does.