After hearing about Tŷ Hafan’s fit for the future refurbishment appeal and the final push to get over the finishing line, Bridget decided to challenge herself and ‘Team ApêlElain’ supporters to her ‘Five days of Fitness’ challenge next week. Hear all about it from Bridget herself:
In 2010 Elain was born with a serious heart condition called Pulmonary Atresia, VSD and MAPCAs along with 22q11.2 Deletion Syndrome. Most of the first year of her life was spent in hospital, undergoing surgeries and three months fighting for her life in ICU.
Following a self-referral to Tŷ Hafan, Elain had her first short break to the hospice in May 2011. Over the past ten years, the hospice has become our second home, our escape and our extended family. We never allowed ourselves to believe that we would ever be in the position of being able to look back over ten years of Elain’s life. In 2013 we were told by Elain’s cardiac team that all attempts to ‘fix’ her heart had failed and that we had very few options left. We prepared to make the most of the time she had left. A year later, much to everyone’s surprise, rather than deteriorating, she appeared to be thriving!
After some investigation, it was suggested to us by Elain’s cardiac team that her heart arteries had grown enough for them to attempt a partial repair. It would not result in making her ‘better’ or give her a normal heart/ling circulation, but it might buy her some more time. In April 2015, Elain underwent her last major heart surgery. The aim was simple, to continue to prolong her life for as long as possible whilst also giving her the best quality of life possible given the limitations of her complex anatomy.
Almost six years later, the ‘last ditch’ surgery has more than delivered, surpassing all our expectations. Elain has blossomed and thrived on so many levels. After being told she would never eat independently, she now has been responsible for 100% of her own calorie intake for over two years. She still manages to attend school full time and in 2019, thanks to a referral from Tŷ Hafan family support, she took her first trip abroad to Disneyland Paris with Magic Moments charity!
From 15-19 February, Bridget and ‘Team ApelElain’ are fundraising for Tŷ Hafan’s #FitForFuture refurbishment appeal with their ‘Five Days of Fitness’ challenge. Bridget said: “we would like to welcome everyone to commit to five consecutive days of fitness to help raise money and awareness for the campaign”. This challenge is suitable for all the family and there will be “special friends teaching free live classes 10:00am everyday of the challenge.”
Bridget explained that: “The classes aim to get everyone fit and active whilst also helping the hospice refurbishment over that finishing line”. One of the last areas of the refurbishment to be completed is the Den for our young adults to relax and feel like a teenager. “Elain is fast becoming a teenager and has older brothers and sisters so we feel that these special, age appropriate areas and provisions are going to mean a great deal to us as a family in the very near future”.
Elain has very little options left for any future intervention and Bridget and her family still do not know what the future holds, however, Tŷ Hafan has been a key source of support for Elain and the family and will continue to do so in the future.
There has been so much support for the refurbishment appeal to ensure that our hospice is fit for the future for families such as Bridget and Elain so they can continue to receive the care and support they so desperately need.