Donate For Abbi
Abbi Monaghan is 13 years old and is “LIVING” with cystinosis. Cystinosis is a terminal metabolic disease in which the amino acid cystine gets into the cells, but has no transporter out. Because of the defect in transportation, the cell crystallizes causing early cell death. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and the brain. With such a rare disease affecting such a small population, research money is scarce to nonexistent, and yet research on complicated diseases like cystinosis often lead to advancements in other diseases. Because cystinosis is a rare disease all the money for research comes directly from family and friends close to those dealing with the disease.
Overall Abbi lives a “normal” life. She loves school, playing with friends, making bracelets, dancing, art and enjoying life. She reminds us every day to slow down and enjoy each moment. Cystinosis has affected Abbi’s growth; she is usually one of the smallest in her grade, but makes up for it with her big personality. She also has ongoing issues with photo sensitivity and wears sunglasses at all times when outside and sometimes inside when under the florescent lights of the school. Abbi is on a strict medication routine taking medication around the clock every 6 hours, upwards of 35 doses of medications per day, plus eye drops hourly and a growth hormone injection nightly.