One Family’s Journey With a Rare, Fatal Disease - Cincinnati Children's Blog

One Family’s Journey With a Rare, Fatal Disease

Layla and Angel Martin – sisters ages four and three – have infantile neuroaxonal dystrophy (INAD), an extremely rare disorder which affects the nervous system. There is no cure for INAD.

Doctors at Cincinnati Children’s spent more than a year attempting to determine what was causing the sisters’ bodies to deteriorate. In 2014, they found the faulty gene that caused their disease. Although the disease is incurable, Cincinnati Children’s is making strides to change this by partnering with the drug maker, Shire, to specifically seek therapies for rare diseases.

“It is hard to raise money for rare-disease research,” said Dr. Tracy Glauser, an epilepsy specialist and associate director of Cincinnati Children’s Research Foundation. “However, once people understand the importance of investigating and studying rare diseases, we get a better sense of why raising money is important. It’s not just for the people who have a rare disease. But it also serves as great insight into other diseases by understanding a pathway that has gone wrong and then developing a treatment that potentially can apply to other diseases.”

Learn more about INAD, the Martin sisters’ story and rare-disease research at Cincinnati.com.

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Cincinnati Children’s News Team

About the Author:

The members of the news team at Cincinnati Children's are responsible for telling the stories of the medical center. Stories of the families we serve, research and clinical care, safe and healthy practices and happenings at the hospital. If it has to do with Cincinnati Children's, Danielle, Nick, Jim, Kate, Rachel, Terry and Shannon will keep you informed.

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Comments

  1. Tori Sturgill November 20, 11:04
    i know them i am friends with their sister and it makes me so upset rearching this topic for school!! its fun to see Angel smiling, but then terrifying to see her cry!!
  2. Candi Duble April 23, 12:39
    Layla and Angel are my nieces, these two special girls has showed us all how to be brave and fight. INAD is a horrible disorder and I hope there can be a cure one day. I want to say thanks to Children's Hospital for all their care and work they have done for my nieces. Layla fought a hard fight, but lost the fight on August 29,2015. Angel is still fighting hard.