When we first laid eyes on our baby girl Adalynn (Addy) it’s safe to say we, two dark haired parents were shocked to see our daughters Snow White hair.
As parents we knew it was strange that her hair was so light but we thought very little of what we thought was a little detail in our daughters life…little did we know that “little detail” was soon to change our lives. It was at Addys’ one month check up that the pediatrician suggested looking into an Albinism Diagnosis… After a few weeks of waiting the Albinism Diagnosis was confirmed by the ophthalmologist.
We soon realized we knew very little if anything at all about Albinism so we did what most parents nowadays would do we turned straight to “Dr. Google”. It was then that we learned rather quickly that genetic testing would be very important moving forward because there is potentially life threatening types of Albinism. After months of fighting for Genetic Testing May of 2020 an already crazy year, our fears were made reality.
Addy did indeed have Hermansky Pudlak Syndrome Type 1. It’s scary as a parent to be told that your baby has a medical condition that some if not most doctors and people knew very little about.
It’s even more scary to be told there is no cure at this time. Shortly after the anxiety and fear settled what little bit it could we got in contact with the HPS Network and what a game changer that was for our family. We were able to build a relationship and a family with people all over the world who knew exactly how we were feeling. A family who has been in our shoes.
A family who like our own will be by your side while you deal with the effects of the diagnosis that changed our lives forever. A family who like your own will fight to help find a cure.
Even now in the midst of the uncertainty moving forward we trust not only in the love we have for each other and the plans the Lord has for our sweet girl, our future children, and our family but we trust that we have a connection with people who will be there like family every step of the way.