PWSA Blog

Brooklyn’s Story

As told by her mom Lauren

When we found out Brooklyn had Prader-Willi Syndrome, we felt lost, overwhelmed, alone and devastated. Our geneticist told us to reach out to PWSA | USA. Right away, they gave us hope in what we thought was a hopeless situation.

PWSA | USA sent us a packet of information that helped not only educate us, but educate the hospital where Brooklyn was. The NICU where Brooklyn was only had one other child in the past 15 years who had been diagnosed with Prader-Willi Syndrome. Their information made the doctors listen and learn.

PWSA | USA put me in contact with a parent mentor. So I didn’t feel wrong or like a bad mom for feeling what I was feeling. We will forever be grateful for the services they provided. Without them I don’t know where we would be. They were my lifeline when I felt like I was drowning.

Our daughter is such a happy, sassy, loving, wonderful little angel. We are so lucky to have her.

 

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