Dear Family, Friends, Neighbors and my Community, August 2017
My name is Jace and I want to tell you my story. I was born March 2017 in San Luis Obispo, California to the best parents ever, Andrew and Rebecca.
Since coming home from the hospital after being born, I was giving my parents something to worry about because I had blood in my stool. At first my pediatrician though it was a food allergy so my mom had to alter her diet so much that she only ate chicken and rice. Unfortunately, it did not help so my pediatrician recommended that I see a pediatric GI specialist. The GI specialist saw me and ordered some routine blood work. Later that night, my parents received a phone call and the doctor suggested I go to Twin Cities ER to get my blood work redrawn because I had dangerously low platelet levels. The ER processed my blood and again my platelets were very low so they recommended that we drive to Valley Children’s Hospital in Madera that night. My parents and I stayed there for two weeks and after many blood tests, upper and lower GI scope with biopsies, and a bone marrow biopsy, I was transferred via ambulance to Lucille Packard Children’s Hospital at Stanford. After almost another week, the final test my team of doctors sent off was a genetic test to Cincinnati, Ohio hoping for a conclusive result. After close to a month of genetic testing, it was undeniable…….I have WAS.
What is WAS? Wiskott-Aldrich Syndrome. It is a very rare (4 in 1,000,000) genetic disorder that usually affects boys. WAS affects the production of white blood cells and platelets, therefore my immune system is compromised and I have a high risk for bleeding. To make me healthy again, a bone marrow transplant is my only option. I have been receiving platelet transfusions almost weekly since the beginning of May and we are preparing for 4-6 weeks in the hospital at Stanford for treatments of chemotherapy and a bone marrow transplant. Then, I will be spending 100 days at the Ronald Mc Donald House so I am able to see my doctors frequently until I am cleared to come home. It will be tricky for my parents because my mom will be taking care of me up at Stanford and my dad will be juggling work and my doctor appointments.
So, how does a family like mine pay for all of this? It is not easy but it can be done by sharing our story with everyone in our community and reaching out to organizations that help families in need. One such national organization called COTA (Children’s Organ Transplant Association) is an organization that assists volunteers with fundraising for all transplant-related expenses. My mom was supposed to go back to work in July but could not and my dad took several weeks off while I was in the hospital so money is tight. We have a fundraising goal of $50,000 + to help with all transplant expenses. Yes, daunting, isn’t it?
COTA is a non-profit so all monies donated to COTA in honor of Jace J is tax deductible to the fullest extent of the law. I would be so grateful for anything you can do to help, as this journey is going to be financially challenging for my parents. Would you be willing to support this charitable organization in my honor? $50,000 + is a lot of money but I know we can do it with your help! *If you prefer not to make an online donation then checks or money orders can be made out to COTA and in the memo write Campaign for Jace J and mailed directly to COTA 2501 West COTA Dr., Bloomington, Indiana 47403
Thank you so much for taking the time to read my story and for helping me along my journey to becoming a healthy, strong boy!
Jace Jones, 5 months
Fundraiser volunteer for COTA- Terri Monell 805-546-8981
We want to thank everyone for supporting our family. Everything from emotional, physical and financial support, is helping us get through this very difficult time. We are focused on the end goal, to get Jace healthy so he can meet everyone who has supported him along this journey. Sending hugs! Love, Andrew, Becca, and baby Jace
Click the PDF icon to the left to see the IRS letter for COTA