The zebra is the official symbol of rare diseases because each zebra’s stripes are unique to them, and each person with a rare disease is unique to them. Thus, the zebra is synonymous Rare Disease Day occurs on Feb. 28 of each year.
A rare disease is a disease that affects fewer than 200,000 people. There is more than 7,000 rare diseases that affects 25 million Americas. Most of the people struggling with these rare diseases are children. There is an innate problem – there is very little funding and research to study these diseases, so it can be challenging to receive diagnoses and treatment.
My family has been hugely affected by a rare disease. My sister Adaline, who is now three years old, was born with a genetic disorder that affects 1 in 800,000 people across the globe. Her disorder is called Argininosuccinate lyase deficiency. Simply put, her body could not break down proteins. She was only allowed five grams of protein a day – to put that in perspective, that is the amount of protein in one hotdog. She spent 23 days in NICU at Nationwide Children’s Hospital after her birth. During that time, the doctors prescribed many medications; however, the intense mixture of medicine damaged Adaline’s hearing leaving her deaf. It was decided she needed a liver transplant; one was scheduled for October 2018. The liver transplant was performed correctly, and now she lives a normal life. But since she lived with a rare disease, the zebra symbol embodies her perfectly.
Mathew Perry, an WC alumnus, also has a sibling with a rare disease. His brother has Angelman Syndrome – it causes him to be nonverbal and he has developmental delays. Perry said, “His diagnose did set us back by taking away the thought that he would have a normal life. But like any other family with a special-needs member, we adjusted, and we have made the best out of the situation.”
Angelman syndrome is also referred to as the “happy puppet syndrome” because most “Angels” always have a smile on their face and are constantly happy. Perry explained, “Even when we have the worst day, we know we can come home to Evin’s smile and everything bad just washes away.”
Those who live with a rare disease are a constant symbol of perseverance. They fight hard for their lives and fight hard to break barriers. The unknown is frightful to most people, yet it is important to remember that people with rare diseases, diseases that little is known about, may be different but they are not less.