This is Mateo AKA Chulo. He is 5 years old & his birthday is on March 17th (St. Patrick’s Day) He has severe neutropenia. Neutropenia is a very rare blood disorder that causes a reduced number or complete lack of neutrophils. Neutrophils are a type of white blood cell that defends the body against bacterial infections. His condition is genetic. Mateo's neutropenia has a profound effect on his daily life, making him extremely vulnerable to infections. The onset of any fever requires prompt hospitalization, often resulting in hospital admissions. Even a common cold virus can potentially develop into sepsis, a scenario that has previously occurred. In an effort to boost his immune system, Mateo undergoes regular Neupogen injections every other day, which help increase his neutrophil count and reduce the risk of illness. His extensive medical history encompasses numerous hospitalizations, surgeries, and annual bone marrow biopsies aimed at monitoring the risk of his condition developing into AML/MDS.

We created ChuloStrong to raise awareness about neutropenia & share Mateo’s struggles and life with severe neutropenia. Any donations are greatly appreciated. Prayers are greatly appreciated and just following us on facebook and instagram and sharing #ChuloStrong with your family & friends to help raise awareness & bring light to this condition through Chulo’s story.

Below is a little more about him and his story .

The diagnosis of Mateo's condition was made in August 2022, when he was almost one and a half years old. Born with the condition, it was initially missed. However, as a parent, I was aware that something was not quite right, given his constant illnesses and the extreme difficulty he faced when sick. He also presented with symptoms including mouth ulcers, recurrent ear infections, and abscesses from a very young age. Following his diagnosis, my initial emotions were characterized by a combination of overwhelm and relief, as we had finally identified the underlying issue, secured the support of a receptive medical team, and began providing him the care he needed, incorporating strategies to minimize illness-related risks. I immediately undertook an exhaustive research effort, which remains an ongoing priority, as I seek to continually enhance my knowledge. As I adapted and gained valuable insights from multiple hospital stays, I investigated various resources and support networks, pursuing innovative solutions to enhance his care. Although the experience has become somewhat more manageable over time, difficult days persist.

Even on his toughest days, Mateo's spirit radiates like a beacon of light. There's something special about Mateo – a pure, infectious joy that touches everyone around him. His compassion shows in the smallest moments, like when he stands in his hospital room doorway during isolation, waving to nurses and spreading smiles throughout the floor. He also loves sitting in the window, eyes lighting up at every sports car that zooms past.

#severeneutropeniaawareness #chulostrong