Monday, April 13, 2015

Hayley Okines Dies From a Rare Genetic Disorder, Progeria

Hayley Okines, 17-years-old , suffered from a rare premature aging disorder called Hutchinson-Gilford Progeria Syndrome (aka Progeria).  Progeria is caused by a protein called progerin that interferes with lamina A.  Lamina A is a protein that stabilizes a cell's nucleus.  That being given, children who suffer from this tend to age 10 times faster.  Hayley's family was informed that she would only have until the age of 13 to live.  However, she decided to be the first one to undergo a treatment at Boston Children Hospital.  Her bone structure and cardiovascular health began to improve.  
Hayley Okines

 Hayley was a brave young woman who suffered from such a terrible illness and was brave enough to seek a treatment that was never done before.  She started something to help other who suffered from Progeria like her.

http://www.medicalnewstoday.com/articles/291979.php
http://www.mayoclinic.org/diseases-conditions/progeria/basics/definition/con-20029424

3 comments:

  1. This women has done amazing things for the research on this disorder. It is unfortunate that she passed away, however she lived to be 17 and that is a wonderful accomplishment not only for her but for all of the other people who suffer from this disorder. It gives them hope for longer lives and a healthier future.

    ReplyDelete
  2. This is a great article because progeria was not a very discussed topic until the movie benjamin button came out ( well at least to my knowledge) and to be able to take part in ground breaking research is an honor in itself her selflessness will not be forgotten in years to come

    ReplyDelete
  3. This is extremely heartbreaking, no parent should have to bury their child. She was a very brave young girl to undergo a surgery with an unknown outcome. Despite all of the struggles she has to undergo in her life, she seemed to be very happy. I am glad she was able to live longer than the doctors had told her. I hope that doctors are able to find treatment for this disease so that other children with this disease are able to live a full life.

    ReplyDelete