At the hospital, we were told that he needed treatment at an inpatient mental health facility. That night, I was told a bed had been found and that in a couple of hours, he would be transferred to the facility. When midnight came and he still hadn’t been transferred, my mother’s intuition was telling me something was not right. The next morning, I was told that he was denied access to the facility because of the infusions he needs for his hemophilia. I was so mad. I was told they were going to reach out to another facility. By day three, I lost it after being told he was not accepted into yet another facility. I felt so helpless. I walked out and cried my heart out. I called the National Hemophilia Foundation and got them to help.

We sent out his bed request to more than 30 facilities in multiple states. Being his advocate became my full-time job. I would not give up. I kept asking for help and for more meetings. I even got the CEO of the hospital to make the calls on our behalf.

On November 5th, 11 days after his suicide attempt, we somehow got a bed in one of the facilities that had originally told us no. I was so grateful he was able to get the treatment he needed and deserved, even if it was at a place 7 hours from home. He is doing better now. He graduated from high school and is on his journey to being independent. But those were the darkest days of my life. 

It is simply not fair that my son had to wait 11 terrible days to get the treatment he needed. What would have happened if I hadn’t been there to demand that he get access? Everyone in the bleeding disorders community deserves access to mental health treatment. And they should not have to move heaven and earth to get it. Hopefully the work that BD SUMHAC is doing will ensure that no other family has to go through what we did.