Hope for Haley

My name is Haley! I am one years old and I have Mowat-Wilson Syndrome. This is a very rare syndrome that causes one of my genes to have a deletion which then causes multiple health conditions. For example, I was born with congenital heart defects that required two surgeries before I was 6 months old along with kidney problems I had to take medicine for. I am slow in meeting my milestones so I work with a physical therapist twice a week and will be starting occupational (whatever that is) therapy here shortly as well!

On my first birthday, I had several seizures that sent me to the ER, I even got a helicopter ride! This visit prompted doctors to dive into a second round of genetic testing and on 6/30 my mommie got the call that I had a special diagnosis.

There are around 300 known cases in the world making it a very rare syndrome. Because of my age, we have no idea the severity or how it may progress. For now we ask for help towards transportation and medicines, but most importantly we ask for prayers.

https://mowat-wilson.org/