Hayden's Heroes

09/14/2020

04/21/2019

http://community.today.com/post/to-the-mom-who-just-received-her-childs-hard-medical-diagnosis-you-will-be-okay?cid=sm_npd_td_fb_MA&fbclid=IwAR2ljWOGPQgKYew5lmXwEoOj5ntC0SHBHPxMihmvcMk7XKpq-InvRAjcQ14

You will find a love within that you never knew you had before. You will become a warrior and advocate. You will not give up.

02/24/2019

Artwork by Hayden’s cousin, Camille

02/03/2019

As of today, Hayden is able to go from 8 grams of protein daily to 28 grams daily! That is a huge improvement. This allows him to eat regular bread, cheese and pasta which he has never been able to do! We are still learning and slowly trying new things but his favorite so far is Poppa Johns gluten free cheese pizza!

02/03/2019

Hayden began the Palynziq injections on October 10th. This is a slow process since the medication has to be titrated over time to avoid reactions.
He was very lucky and had minimal reactions...no site reactions but did have a few days of joint pain in November. That subsided and has had nothing since.
He is now on 20mg injections daily. He will continue this every day of his life.
We are happy to say that he is now considered a responder since his phe levels have dropped in the control range. I’m attaching a picture of the progression of his phe levels. Hopefully this will give anyone who begins this journey an idea of how it works. However please remember that each patient responds differently.

02/03/2019

As most of you know, Hayden is on Palynziq, an enzyme substitute for PKU. I thought I’d use this page to update on his progress and give some insight to anyone joining in this journey.

07/30/2016

If you shop on Amazon, please consider helping the NPKUA. This is the organization we send our money to for research! Hayden and I are currently in Indianapolis attending a conference and learning about current research with liver cell transplant as well as new probiotic treatment! Very exciting!

12/19/2015

Another PKU family helped with the fundraising efforts of Hayden's Heroes! Low protein food was delivered to a PKU family in Louisiana. The costs of these medical foods are expensive but necessary. We want to not only raise awareness, assist research missions but help our own people in our state.

12/19/2015

Hayden's Heroes fundraiser in the works! What would be your top pick for a successful fundraiser? Would you participate in a 5K, 10K, or some other type of race?

09/09/2015

September is Newborn Screening Awareness Month! Hayden was a "normal" looking baby despite being almost 12 pounds, but without this screening, he would not be the person he is today!