Thanks to Nighbor and her family, progeria research and funding has come a long way. When Megan Nighbor was 13 years old she was featured in the HBO documentary, Life According to Sam , which discussed progeria and how it affected titular subject Sam Berns, who passed away at the age of At the time of his death in , Devin Scullion had been one of the longest surviving people with progeria.
Scullion was 20 years old when he passed from heart failure caused by his progeria. Because Scullion lived quite long for someone with progeria, researchers are studying his life to help prolong the lives of others with the illness.
Devin Scullion was part of the clinical trials for a drug called Lonafarnib, which is the first known effective treatment for progeria. While many of the people on this list who are still around today have been featured numerous times on the news, Mickey Hays was the only one who had a part in a feature film. Hays lived for exactly 20 years as he died on the same day he was born.
Claudia Amaral from Viseu Portugal was featured in international news outlets not long after she turned 20 years old in Although Amaral started showing signs of progeria, such as hair loss and wrinkled skin, when she was only four months old, she was not formally diagnosed until after her first birthday. For the most part, Claudia Amaral has not suffered too much from her progeria and she recovers quickly. In an interview, Amaral said that she was supposed to rest after her hip replacement surgery, but she went out dancing with her friends instead.
Michiel Vandeweert is currently 21 years old, living well beyond the average age of someone with progeria. Vandeweert also has a younger sister with progeria, Amber, who is 13 years old. The Vandeweert siblings have been interviewed numerous times and have stated that their goal is to be the longest surviving people with progeria ever.
Vandeweert was diagnosed with progeria when he was just eight months old and his parents had his sister checked immediately after she was born. Despite the challenges of having progeria, Michiel Vandeweert has tried to live as normal of a life as possible.
Vandeweert racing go karts and can even drive a regular car. Current Age or Oldest Age Reached: 24 years old in will be turning 25 at the end of Country of Origin: Schio, Italy Occupation if applicable : Progeria advocate and college student.
Sammy Basso from Italy has been featured on several news outlets over the years because he is currently one of the oldest survivors of progeria. Accessed Feb. Learning about progeria.
National Human Genome Research Institute. Hutchinson-Gilford progeria. National Organization for Rare Disorders. Progeria Hutchinson-Gilford syndrome. Merck Manual Professional Version. National Institutes of Health. Chronic illness and children. American Academy of Child and Adolescent Psychiatry. Swahari V, et al. Speeding up the clock: The past, present and future of progeria.
Development, Growth and Differentiation. The progeria handbook: A guide for families and health care providers of children with progeria. Progeria Research Foundation. Johnson JN expert opinion.
Mayo Clinic, Rochester, Minn. Progeria is caused by a mutation in a gene called LMNA which produces the Lamin A protein, used to hold the nucleus of a cell together. Other symptoms include dwarfism, lack of body fat and muscle, loss of hair, visible veins, a high-pitched voice and stiffness in joints. The 'diva' from Austin, Texas also has more than 13 million likes on Facebook.
Adalia's mother Natalia Pallante said that when she was born to when she was a month old the doctors weren't happy with her growth. That's when the real changes started happening. She said that is when she started losing her hair and her veins started showing up more and her skin was thinning out.
The life expectancy for a child with this disease is 13 years old but despite her health issues, Adalia is relishing her internet stardom. Her social media channels feature her singing and showing off her make-up skills, showing her infectious personality.
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