Our Story

On October 19th, 2020 we welcomed a beautiful baby girl into our family. Presley Grace had her Newborn Screen done in the hospital, at the time we didn't think anything of it other than it being a required test. Once we were released from the hospital to go home, it was such an exciting time. Then, we received a call from her pediatrician. A call that a lot of you visiting this page know all too well. We were told that Presley's Newborn Screen came back positive for Phenylketonuria or, PKU. When we heard those words through the phone, it was as if time stood still. These words were so incredibly heavy. It was such a whirlwind of emotions. We were first time parents who had just brought our precious baby girl home. 

            Unfortunately, her pediatrician did not know very much about PKU and didn't want to give us false information. We were told that the specialist in our area would be calling in a few hours to explain everything to us in detail. While we waited for that phone call, we started researching and reading things that we realistically shouldn't have. We had never heard of PKU prior to receiving this news. Once the specialist finally called us, we were terrified and thought everything we read was accurate. However, after about a two hour phone call with the specialist, our worries were put at ease. We were still devastated and I don't think that we will ever stop worrying, but that phone call truly helped.  Having PKU does not mean that her quality of life is diminished. She will grow up to be a healthy, and happy girl, and will be just like the other kids. She will just have a low protein diet. 

            Since PKU is not widely known, it is our mission to bring as much awareness about it as possible. Presley is such a happy baby and we are getting a handle on her spot checks, and we are beginning to get an idea of how much protein she can tolerate. We have come so far in a short period of time. We want this blog to be a safe area where everyone can learn more about PKU, or write entries with your own experiences. Having support is incredibly important and has helped our family a tremendous amount. We would like to help others who need support as well. This platform can be a great place to post advice related to PKU, and a place where you can ask questions that will receive answers. 

            Bringing awareness to PKU is one of our main goals. We have created an Etsy Shop with PKU related goods. Once we do more research, we will be choosing an organization, or multiple organizations to donate a certain percentage of the proceeds to. Additionally, we will also be posting links to up to date research being done on PKU, recent developments, and articles that can be beneficial reads. Thank you for visiting our site, we sincerely hope that it will bring assistance and awareness to those who visit. 

 

Our warmest regards, 

 

Paige, Roy, and most importantly, Presley