I have a daughter with dilated Cardiomyopathy – diagnosed at 6 weeks old and now 21 years old. She has a pacemaker and ICD fitted and is relatively well although is frequently tired and suffers low blood pressure and heart rate due to medication she has to take. My sister saw Carren’s Facebook plea for volunteers and sent it to me saying “this has your name written all over it”! I applied and went on a training day at Alder Hey hospital on 12 July 2013. My first visit with my family was on 30 July 2013 – Mum April and baby Wyatt Andrews who was born with ToF. My first few visits were to their home and I was able to spend time chatting and getting to know the family and having lovely cuddles with Wyatt. I helped out by playing with Wyatt’s two older siblings whilst mum got some housework done and April quickly became a good friend – she is always interested in hearing about my own family and particularly my heart daughter. Unfortunately, Wyatt became quite poorly and by the end of August he had been admitted to their local hospital and then transferred to Alder Hey. All of my visits since then have been hospital based. April and Wyatt have been living at Alder Hey ever since. April, and the rest of the family when they can be together, have a room in McDonald House so that she can be on hand for Wyatt. If the other children were with her on my visits I would take them to the play room on the ward to give Mum a break and some time with Wyatt, sometimes Mum was able to go and get a coffee knowing that I was at Wyatt’s bedside and the nurses on hand if needed. Other visits I have just sat in the cafe and had a coffee with Mum if she just needed to talk and we’d go for a walk outside. I have learned so much about myself and about different heart conditions and treatments. Wyatt also has a feeding ‘peg’ which is something we were shown at the training day but my daughter had never needed. When Wyatt gets back home I will have some extra training, if needed, so that I can understand his complex needs. I was quite nervous about my inexperience with these more complex heart and feeding issues but I have always felt supported by Lagan’s Foundation team and his Mum – I am never left alone without either Wyatt’s Mum being in the house or his nurses being on hand in the hospital . I have grown in confidence and can see how my time with them makes a difference. As a Mum of a child with a heart condition I can empathise with worries, anxiety and fears and appreciate the value of just having someone to talk to and a helping hand for a few hours each week. I have also made some wonderful new friends and have been inspired by the Lagan’s Team members particularly. Lagan’s Foundation makes a difference – I am proud to be a part of that!
Update : From January 2015 Julie has been promoted to Family Liaison Officer, ensuring all families have an avenue of communication with a caring and compassionate member of the team.
I chose to become a Lagan’s Foundation Champion Volunteer as I wanted to do something to help. A close family friend had a heart defect and unfortunately passed away, so this has always been something very close to my heart. My aim is to not just raise funds for Lagan’s foundation but to raise awareness of heart and feeding issues and also to get lots of other people involved. Also once I reach the age I will most definitely become a hospital support volunteer as I want to give something back. I want to be there to support a family and help them as much as I can. Lagan’s Foundation offers such a precious and valuable service and I want to help make a difference to children and their families.
I first heard about Lagan’s Foundation when Carren came to my college UTC Liverpool, to talk about Lagan’s story & explain how Lagan’s foundation was created. Carren spoke about the Foundation named after her daughter and looked to recruit volunteers and champions for the Liverpool & Wirral areas. I found the visit and their story very emotional, Carren is inspiring.
I started the application process immediately and I am now one of the Wirral Champions!
I was diagnosed with an autoimmune disease when I was 10 years old, which caused various problems including eating difficulties, breathing difficulties, being bedridden then housebound and later having to use a wheelchair, this lasted almost 6 years. I think that provides me with a unique understanding of the implications conditions can have in children. I began an incredible recovery last summer and I am now determined to help people who are in a position similar to the one I was once in. I am pursuing a career in healthcare, and I look forward to providing support for families through Lagan’s Foundation!