This page is dedicated to our first grandchild, Brida Elizabeth Heartford; a beautiful, brave little girl, who despite all the love and medical care in the world, had no chance of survival.

Brida was born on the 25th January 2007,  with a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. The condition is known as Epidermolysis Bullosa (EB). Brida had the most severe form, Herlitz Junctional EB and her little life was severly limited.  Brave little Brida eventually died on 23rd March 2008, aged 14 months as the result of malnutrition and anaemia, caused by serious external and internal blistering.

There was just a 1 in 17,000 chance for Brida to have been born with EB.  She inherited the condition from her parents who were not aware that they were carriers of the EB Gene until  Brida was born with the skin missing from the fingers on both her hands. They had no prior warning that she would be affected.

We were told that she was only expected to live for a few months but with the love, care and dedication of amazing parents she  astounded everyone by making her first birthday. Although Brida's health  deteriorated, with sores spreading all over her tiny body and breaking down her internal organs Stacey and Damo were still able to manage her condition at home.   This amazing achievement was  made possible with not only the love and care of my daugher and son in law, but also with the support of a team of specialist EB nurses based out of Great Ormond Street Hospital.

DebRA UK is the charity that fund these wonderful people, who give care to affected families by visiting them in their own homes, and by being on 24 hour call should any advice be needed. Without DeBRA these wonderful carers wouldn't be able to give the support that these families needs to get by. 

In March 2007, just after Brida's birth Damo ran the Marathon De Sable through the Sahara Desert with six collegues from the RAF and  just three weeks after Brida's death, at The Flora London Marathon in  April 2008 Stacey ran her first ever Marathon with Damo by her side.   This was their way of showing their gratitude to DebRA for the care the family received and is still receiving, and ensuring that in raising funds to help future sufferers little Brida's life will not have been in vain.  To date over £38,500 has been raised in Brida's name

I wish this work to continue and I opened this page to enable everyone to still have an opportunity to remember Brida on her special days, by leaving a message here for the family and making a small contribution for Debra.

As a result of the genetic research partly funded by your donations to DEBRA, we are delighted to announce that Brida's baby sister Morwenna was born on 9th February 2013, She is free from EB, her brother Arthur was born 21st July 2015, although EB free the genetic testing has shown he is a carrier.

Brida Elizabeth Heartford 25.1.2007 - 23.3.2008

There is a star in the sky named after Brida, it is shining more brightly now.  Our beautiful little butterfly baby, no longer in pain.