Stephanie Holland

RUNNING FOR BABY BRIDA

Fundraising for DEBRA
£13,310
raised of £12,000 target
Donations cannot currently be made to this page
For Baby Brida , 15 August 2007
DEBRA

Verified by JustGiving

RCN 1084958
We provide care and support to individuals and families affected by EB

Story

Meet my daughter Stacey and my only 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; 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 little  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 this brave little girl  astounded everyone by making her first birthday.  Brida's health  deteriorated, with sores spreading all over her tiny body and breaking down her internal organs but  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 a remarkable mummy and daddy, but also with the support of a team of specialist EB nurses based out of Great Ormond Street Hospital. DebRA UK fund these wonderful people, who are able to 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 people wouldn't be able to give the support that the family needs to get by. 

In an attempt to raise awareness of her little girls condition and to help raise funds for this wonderful charity, Bridas mum, my daughter Stacey took part in the April 2008 Flora London Marathon.  This was her way of showing her 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. 


Stacey and Damo would like me to pass on special thanks to all those in the RAF and Army in Cyprus who have shown them so much support over the last difficult year, and to RAFs Aldergrove, Lyneham, Marham , Waddington, the DAC Melton  the Chameleons hockey club and the Sutton in Ashfield Dramatic Society all of whom have contributed most generously to our off line total.

Our heartfelt thanks also go to all of our family, friends and the many people we don't even know, for your continued love, support, and prayers; they have been and will remain a constant comfort to us, as do the messages you leave here; your kindness will never be forgotten.

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.

Stacey finished the London Flora Marathon with Damo at her side she completed the 26 miles in 5hrs35 minutes her overall position was 30714 - Well done my brave daughter, we are so very proud of you! xx

Although this page will close on 15th August, you are still able to donate to DebRA in Brida's name on our new memorial page www.justgiving.com/brida-elizabeth  also www.justgiving.com/run-nurses-run and  www.justgiving.com/gnr4brida  In total, with your support so far we have raised in excess of £28,0000 in Brida Elizabeth's name for this amazing charity. 

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About the charity

DEBRA

Verified by JustGiving

RCN 1084958
DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition which, in the worst cases, can be fatal. We fund pioneering research and provide care and support to individuals and families living with EB.

Donation summary

Total raised
£13,310.00
+ £1,294.05 Gift Aid
Online donations
£6,478.00
Offline donations
£6,832.00

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