Introducing our Rare Disease Day Poster Child 2018
“Gabby is bright and outgoing and everywhere she goes people are drawn to her. She has a great sense of humour, is confident, extremely determined and brave and we love her to bits,” says Gabrielle’s Mum Megan.
Gabrielle is seven years old and has Dyskeratosis Congenita, a life-limiting telomere biology disorder. She was diagnosed at four years old, and had a bone marrow transplant at age five. Her symptoms continue to present and worsen.
Rare Disease Day takes place around the world on the last day of February each year. It is an opportunity to raise awareness of the over 7,000 rare disorders that combined affect eight percent of New Zealanders.
Gabrielle and her story will feature on the Rare Disease Day poster as well as a giant billboard in Wellington. NZORD will also share her story with media contacts and through social media.
“NZORD is delighted to feature Gabrielle as part of our Rare Disease Day commemorations,” says Dr Collette Bromhead, NZORD chief executive. “We think her story and her smile will really connect with the community, and will help people understand the journey these special New Zealanders take.”
“We had a great response from the rare disorder community and had a hard time choosing from all the applicants,” says Collette.
Dyskeratosis Congenita (DC) is estimated to occur in one in one million people and is a genetic disorder. DC can affect virtually any organ in the body, but primarily organs that need continual regeneration to survive. The organs most commonly involved are the skin and nails, the bone marrow where blood cells are produced, the lung as gastrointestinal tract, including the liver. Patients with DC are also at more risk of developing certain types of cancers, compared with other people in the general population.