Hello, my name is Addyson Martz...AKA Princess Addy! When I was born, I did not cry much, I was very floppy and I did not have muscle strength to eat. My doctor was very worried about me, so after three days at St. Clare Hospital in Baraboo, I took my first road trip in a very fancy ambulance. I was taken to St. Mary's Hospital in Madison, where I spent the first month of my life in the NICU. There I met many new doctors/specialists and more amazing nurses whom crowned me with the name of Princess Addy! They even put the name on my room door! During that month, I underwent many tests and procedures, but none of them ever seemed to give us the answers we were looking for. Finally on May 22nd, my brother Dawson's Birthday, my parent's Tori and Mike were given an answer. They were told that I had a rare genetic disorder that affects 12-15,000 infants each year, called Prader-Willi Syndrome. Unfortunately, there is no cure at this time! I underwent surgery to have a feeding tube placed and was finally able to go home with my family on May 31st!
On May 2nd, I will be 8yrs old! May is also Prader-Willi Awareness Month! No, my parent's did not plan that...LOL! Though the last 8 yrs have had many challenges and there will be many more to come, I am very greatful for the amazing group of people who Love and Support me endlessly! Though I can be a handful at times, my parents like to tell people I can be very entertaining. I have a heart of gold and a personality to match! My mom tells me "God gave me you" for a reason"! I am greatful for the love and support of my grandma and Papa, aunts and uncles, cousins, brothers, nieces and yes, my bonus aunties, too! I have a wonderful educational team and an amazing group of doctors/specialists and nurses, whom I have blown away since day one with my stubborness and perserverance! I may get that from my mom, but don't tell her I said so! LOL
Unfortunately, due to the life of COVID, my friends at Prader-Willi in Oconomowoc have not been able to hold our yearly fundraiser walk for the last few years. This year we are finally back and as a very special Birthday Gift, I am looking to add to my group of friends/supporters! Any amount is greatly appreciated and I THANK-YOU all in advance! This year my goal for ADDY'S ARMY is to raise $1,000.00! As I continue to hope and pray everyday for a cure, your donations would graciously help to keep the awareness and research going until one is found! If you would like to hear more about my story please feel free to reach out to my parents, they are both on Facebook!
Sincerely, ADDY'S ARMY
Addyson, Tori, Mike and Dawson Martz
If you would like to learn more about Prader-Willi Syndrome go to: www.pwsaofwi.org or www.pwsausa.org
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Our annual PWS May Awareness Walkathon IS BACK!!! And we are so excited to announce a new look this year and a new name: A Walk in the Park!
Join us at Roosevelt Park in Oconomowoc, WI on Saturday, May 7th. Registration is from 9 am - 10 am followed by the walk.
Come help us spread awareness and raise money for Prader-Willi Syndrome, spend some time with family and friends, enjoy a nice lunch... and dancing!
And did we mention the awesome SWAG?