Elain’s Story

Elain was born in March 2010 with complex Pulmonary Atresia,
VSD and MAPCAs along with 22q11.2 Deletion Syndrome. She spent much of the first year of her life critically ill in Bristol Royal Hospital for Children. In Spring 2013, following several attempts at trying to fix Elain’s heart we were told that nothing more could be done for her. Her Cardiologist was open and honest and told us that she would be highly unlikely to reach her teenage years. With the help of the community palliative care services and Ty Hafan Children’s hospice we prepared ourselves to enjoy each moment we had with her and to make her comfortable for however long it was she had left.

In 2014 however, after an unexpected period of relative stability and after further investigation, we were given a high-risk surgical
option. After much deliberation we decided to give it a shot and in April 2015 underwent a partial repair. During the years following this surgery she went from strength to strength. For the first time in her life, she was able to eat orally and completely independent from her feeding tube, she gained weight, attended school full time and was able to enjoy activities such as swimming,
horse riding, softplay and family holidays. Apart from two interventional cardiac catheters in 2016 and 2018 she has not required any further surgery.

In January and June 2022 the team at Bristol carried out a
further cardiac MRI and catheterization to see how things are looking for Elain. Although still currently stable, once again they have highlighted that Elain’s anatomy is not particularly robust or compatible with a long life. Although they have presented us with another high-risk surgical option, we currently feel that Elain’s quality of life is so good that it is simply not worth the
risk at this stage. Waiting also unfortunately also carries a risk and it may be that surgery will no longer be in her best interests further down the line.

With her future still looking uncertain, we continue to receive
an incredible amount of support from Ty Hafan Children’s hospice. Through the darkest times and when it feels like there is no hope they are there to help, support and provide much needed comfort and reassurance.

In less than 2 weeks, Elain will turn 13. Ten years after
being told it would be highly unlikely that she would reach her teenage years, she’s not only made it but also managed to live her best life possible in the process! Penblwydd Hapus Elain!! We are so proud of you!!

Ty Hafan 

We are supported by Ty Hafan in many different ways  but currently this is via short breaks and family support. They help me cope with the many varied different emotions and worries that come with raising a child with a life limiting condition. They help me understand that what I am feeling and experiencing is normal.

Along with end of life care they also provide respite in the form of short breaks, complimentary therapy and a sibling support group.

Welsh 3 Peaks challenge 2023

As somebody relatively active, I am really looking forward to the challenge of the Welsh 3 Peaks,. I also however know how tough both Snowdon and Cadair Idris can be, they are not mountains to be taken lightly, even in good weather and one at a time! I think us Mums are stronger than we think though, we have to deal with and juggle a lot. Conquering the 3 peaks together as a team will be a once in a lifetime experience!

I’m so grateful for any donations large or small, they will all help this amazing service continue to support families like mine ❤️