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Adalia Rose, 6-Year-Old With Premature Aging, Promotes Fundraiser For Progeria Cure

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Adalia Rose is 6-years-young, but she has a condition that makes her look much older. She suffers from a rare genetic disorder called progeria, which causes premature aging in children. But instead of allowing that to conquer her life, Adalia has become an inspiration to millions and a beacon of hope for other children who struggle with the condition.

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Email: info@progeriaresearch.org
Phone number: (978) 535-2594

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For individual facing progeria, they will need a lot of support both emotionally and physically. It is important to answer the questions your child may have regarding their condition, no matter how difficult. For the family, it would be beneficial to join a support group where you can talk about your emotions with others who have experienced what you are going through. Also, talking and asking questions to a doctor is a good idea. They have expert advice.

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The life of a child with Progeria is unfortunately short on average. 13 is usually the age children with Hutchinson-Gilford progeria live to, though they can live from 7-30.

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Only 1 in 14 million infants are born with progeria which makes this a very rare disorder. There have been 130 cases reported since it was discovered in 1886

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Progeria is an autosomal dominant condition. This means that it takes one copy of the altered gene in each cell to cause the syndrome. You get progeria from a mutation in your LMNA gene. This disorder normally occurs in people have no history of HGPS.

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A genetic test  is currently available to test children for Hutchinson-Gilford progeria. Before this test, doctors had to base diagnosis off of just symptoms.

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- progeriaresearch.org
- whonamedit.com
- mayoclinic.org
- genome.gov
- sharecare.com

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When a baby is born with progeria, there are no physical clues to tell whether or not they have HGPS. In their first year, however, the growth of the child slows. Though their physical appearance is changing, their intelligence remains the same. the distinctive appearance symptoms are as follows:
- below-average height and weight
- narrow face and smaller lower jaw
- thin lips and beaked nose
- head too large for face
- incomplete closure of eyelids
- hair loss
-thinning, wrinkled skin
- visible veins and a high-pitched voice
The health issues include:
- effects similar to scleroderma
- delayed tooth formation
- hearing loss
- loss of fat and muscle under skin
- fragile bones and stiff joints
- hip dislocation
- severe progressive heart and blood vessel disease

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Hutchinson-Gilford progeria was discovered by Jonathan Hutchinson in 1886. He studied and documented the symptoms a 6 year old boy was experiencing. Hastings Gilford continued with his research and called this disorder progeria.

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Progeria is a fatal genetic condition where a child's body ages faster than normal. The word progeria is derived from the Greek and means "prematurely old".