When Devin was diagnosed, the cause of progeria was unknown and the prognosis was bleak.
This is why children with progeria have such issues with bone density and rigidity.
When Devin was born, said Ms. Madley, she was told there were no treatments for progeria.
The Progeria Research Foundation may be able to help you connect with other families coping with progeria.
Dr. Gordon is an author of the paper published Monday and the mother of a child with progeria.
Now, results from the first clinical drug trial are offering hope for researchers, children with progeria and their parents.
Heart disease due to atherosclerosis, also known as hardening of the arteries, is a critical problem for children with progeria.
"It's huge, " said Dr. Leslie Gordon, lead author of the study and medical director of the Progeria Research Foundation.
But Devin had a genetic condition called Hutchinson-Gilford progeria syndrome, also known as progeria, which causes premature, accelerated aging.
Progeria affects approximately one in every 4 million to 8 million infants.
Doctors told her the life span for a child with progeria was about 13 years, but Devin would likely live about 7 years.
He said his lab is testing a form of the drug rapamycin in mice with progeria that could eventually be tried as part of a drug-treatment cocktail.
However, encouraging results from the first clinical drug trial for children with progeria has researchers hopeful that the first treatment for the disease could be on the horizon.
In dealing with a disorder such as progeria, support groups can be a valuable part of a wider network of social support that includes health care professionals, family and friends.
"This encouraging example from progeria, one of the rarest of all human diseases, should give a shot in the arm to make this therapeutic story happen again and again, " he said.
Researchers have also identified another 35 children with progeria, making a total of 80, and there are plans for a third trial that will include these children and a fourth drug.
Maybe you could start with the recent publication by Francis Collins, the head of NIH, claiming to have performed a successful clinical trial treating kids with progeria with farnesyltransferase inhibitors (FTIs).
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Learning your child has progeria can be emotionally devastating.
Because progeria is so rare, you may not be able to find a progeria-specific support group, but you may be able to find a group for parents of children with chronic illness.
But the drug "hits a lot of targets, and one concern is to make sure you are not inducing an untoward effect in people who are not as severe as kids with progeria, " Dr. Collins said.
Francis Collins, director of the National Institutes of Health and one of the discoverers of the gene that causes progeria, said the drug's usefulness for vascular stiffness in normal aging is an important question to study.
The Buck Institute's Dr. Kennedy led a team earlier this year that found that another form of rapamycin was effective in increasing the life spans and improving symptoms in mice with two different diseases caused by other mutations in the progeria-connected Lamin A gene.
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