My name is Solana Varela Acosta and this is my story:
From the day I was born in Argentina I was sick, when I was two years old the doctors diagnosed me with a rare disease called “Severe Chronic Neutropenia”
Severe chronic neutropenia (SCN) is a rare blood disorder characterized by abnormally low levels of certain white blood cells (neutrophils) in the body (neutropenia). Neutrophils play an essential role in fighting bacterial infections by surrounding and destroying invading bacteria (phagocytosis). Symptoms associated with severe chronic neutropenia include recurring fevers, mouth sores (ulcers), and/or inflammation of the tissues that surround and support the teeth (periodontitis). Due to low levels of neutrophils, it makes a person more susceptible to recurring infections that, in some cases, may result in life-threatening complications.
SCN is estimated to affect approximately 0.5 to 1 case per million populations in the United States and is treated with injections of a cytokine called G-CSF which is a manufactured version of the natural hormones that stimulate the bone marrow to produce neutrophils. G-CSF increases the number of neutrophil generated by the bone marrow and improves the efficiency of their bacteria-killing ability. In SCN cases unresponsive to G-CSF or if leukemia has developed, bone marrow transplants have been tried with varying success.
I am only 7 years old, but so far I have had more than 30 hospitalizations, from one week to one month. I’ve had gallbladder surgery, all the antibiotics have caused me many stones, I have ASTHMA, which means that when I have a crises I have to depend on an oxygen tube, several punctures marrow, biopsy, lesions in the mouth and the skin, I almost had a colostomy, but by a miracle I didn’t have it. I went through and I got over so many things, always with the support and love of my family, who do and will do anything for me. My mom and dad left everything behind and sold everything they had to be able to bring me to the U.S. where a good treatment is available for me, to improve my quality of life and to be able to have a normal life in some way.
Today we live in the Ronald McDonalds House in Fort Lauderdale, I go to school and my brother Felipe (5) goes to a pre K, we are learning English and enjoying the new culture very much. My dad is waiting for a work permit to arrive hopefully any time soon, because at the moment my family in Argentina is working really hard to support us here. Since we are not U.S. residents we don’t qualified for any help from the government, so my dad has to pay for my health insurance because I have to see a doctor every other day and need medications all the time. We truly appreciate any help or donation.
Solana Varela Acosta