Girl with Unusual Condition Talks to teachers and Students Alike on world Rare Disease Day

rare disease

Ava Garnett talking about her rare disease early Tuesday morning. She was helped by an older student to deliver her message to the entire student body.

Fourth-grader Ava Garnett was born with a rare condition that affects her elbows, kneecaps, nails and other joints. Currently, she is studying at Petrides School in Sunnyside. According to her family, nothing can stop her from living her life as a normal child, taking part in various school activities and even participating in basketball championships with the school team.

However, on Tuesday, February 27th, she took the role of a teacher and talked to everyone at her school, including her classmates’ parents and school staff about rare diseases.

“I would like people who are different to be treated the way we are all treated and for them to be happy”, said Ava.

For the event, Petrides School’s students dressed in blue denim jeans and sported blue ribbons, offered by an organization that aims to eradicate the challenges of rare diseases, Global Genes.

Impact of Rare Diseases Worldwide

Global Genes researchers say approximately 7,000 unusual disorders have been identified so far across the globe. Almost 350 million people suffer from some sort of rare disease. Moreover, almost half of all patients are children.

Ava Garnett suffers from Nail Patella Syndrome, a genetic disorder that affects connective tissue, bones, and joints. Because of this, patients have trouble performing usual tasks because of the limitation of joint mobility, that sometimes can also involve dislocations. Nail Patella Syndrome Worldwide says that the main areas affected are the kneecaps and elbow, as patients can develop osteoarthritis at some point during their lives.

On Tuesday, Ava got her chance to talk to the entire educational facility she studies at about her condition. According to Joanne Buckheit, the unit’s principal, this not only empowered the little girl but also delivered a strong message to the entire student body.

Ava’s Message

On February 28th, the fourth-grader was helped by the school’s student body president, Christian Lorenzo, to make the morning announcement. After introducing her, Lorenzo stepped away and let Ava share her story with everyone.

The little girl started her speech with a short introduction, talking about the World Rare Disease Day, which started in 2008 and then went on to speak about herself, her daily routine, and her battle with the disease.

Image Source: Youtube

About Andreas Petersen

Andreas was too little to remember when he and his parents first set foot in America. He considers himself a true American citizen, but uses every opportunity to promote his Danish origins. He is deeply found of politics, all nations’ politics and generally looks forward to the presidential elections. His BA degree in Political Sciences has helped him get familiar to the constitutional frames of US and non-US nations.