Age 3 – Lake Wales, Florida
Along with mother Chrystina

Mateo’s Neutropenia journey: Mateo had always been quite sick, resulting in numerous doctor and hospital visits with no known reason identified as a cause of his illness. Mateo’s mother advocated on his behalf and requested that the hospital evaluate his neutrophil counts due to his father also having neutropenia. It was at that time that the doctors discovered Mateo to not have any neutrophils, and he was subsequently hospitalized for several days. His mother Chrystina noted “through a bone marrow biopsy, the doctors determined that he is a carrier of a very rare form of the ELANE gene which [according to] the SCNIR, Mateo was the 6th person to add on that list to carry that specific type of gene. He has Severe Chronic Congenital Neutropenia.
Chrystina writes “Mateo still struggles daily with his neutropenia diagnosis, but we try to make the most of everyday. He has annual bone marrow biopsies to monitor everything and the risk of AML/MDS and monthly bloodwork. He takes a neupogen shot currently every other day. The shot does give him symptoms such as bone pain, headaches and tiredness. He also is still hospitalized quite a bit. He has now had sepsis and 8 surgeries. He remains his strong, brave and happy self as always though. We have been raising awareness about neutropenia on Mateo’s behalf through social media and a lemonade stand we did once and are looking to do more often. We have created a Facebook page called “ChuloStrong” and it is some of Mateo’s AKA Chulo story and life with neutropenia and raising awareness through his story. We are looking to expand to more social media platforms such as TikTok and also looking to create neutropenia awareness and ChuloStrong apparel & more . Our beginning is the lemonade stand and some brochures we made sharing a little about Mateo’s story and neutropenia itself. Slowly but surely, we are getting there. I am also looking into getting into neutropenia research myself and going to college to get my degree needed to pursue a career based into neutropenia & AML/MDS. I am constantly trying to find anything and everything to help my baby live a normal life and raise all the awareness possible for neutropenia through Mateo’s story.
Thank you Mateo and Chrystina for your dedication to raising awareness about Neutropenia! We are excited for you to continue as an Ambassador for the NNN and can’t wait to see all the fun things you do over this next year!!