Heart warrior Evie is just one of the thousands of babies, children and adults living with congenital heart disease in our region who are supported by CHSF.
Evie’s mummy Chelsea has kindly told us all about their family’s story so far and why they’ll be wearing red this February…
Evie, my miracle, my was born with a rare heart condition – Tetralogy of Fallot with VSD. They found Evie’s condition on my 20-week scan at Pontefract and I got an emergency referral to the Leeds Congenital Heart Unit at Leeds General Infirmary.
I was so scared waiting for my scan and when the day arrived I was so nervous. I was just 21 when I found out I was pregnant and they gave Evie a 50% chance of survival.
I was offered the option of a termination, not once but twice. But I wanted to give my girl a fighting chance and boy did she prove them wrong. She’s such a fighter!
I was told Evie would be a poorly baby and would need quite a lot of surgery. They even said she might only live a few hours! She was such a small, cute, little baby. Evie weighed 5Ibs 11oz and she was beautiful.
As well as her CHD, Evie also has other needs such as profound deafness, muscle delay and Urban Syndrome in her eye.
On the 7th October 2019 Evie did have two Glenn shunts fitted as her oxygen levels were quite low at 75%. However, the surgeons wanted Evie to gain more weight before she was able to receive her full heart repair.
“With COVID still around, I did everything on my own. Nine long hours my girl was in theatre but I had such amazing support from Children’s Heart Surgery Fund…”
A year down the line Miss Carin Van Doorn, our superhero, saved my Evie. On 30th October 2020 Evie received her full heart repair.
It broke me mentally. With COVID still around, I did everything on my own. Nine long hours my girl was in theatre but I had such amazing support from Children’s Heart Surgery Fund and the incredible nurses. Without the support I received I wouldn’t have been able to do it. Thank you so much for everything.
Evie received a certificate and a Katie Bear from Children’s Heart Surgery Fund after her surgery. She loves her bear!
When she was in theatre, the surgeons noticed Evie’s Glenn stents had fallen into her aorta (this had not happened before). On 8th September 2021, Evie had Cath lab surgery to balloon the stent in her aorta. It couldn’t be removed as it was too embedded.
Yet again, Children’s Heart Surgery Fund and the ward were incredibly amazing! Evie’s valves are still leaking and will need a valve replacement when she’s around 10 years old, fingers crossed! I know I will receive the best support from the Charity!
Evie is doing better than ever. She’s such an amazing, beautiful, happy three year old little girl who loves life so much.
She’s now at school and does everything a three year old child would do. Evie loves to paint and play with her friends and dolls!
We’ve been raising money over the past year for Children’s Heart Surgery Fund, doing two different fundraisers.
The first one on Wear Red Day 2021, just 8 weeks after Evie’s major surgery. Evie walked 5km and raised an amazing £700. And then a full year later, for her heart anniversary, raised a further £1085!
This is all for the charity that saved my daughter. I just wanted to give them something back and the money that is raised for this charity will help my Evie and lots of other children in future.
“…the money that is raised for this charity will help my Evie and lots of other children in future.”
Please join in with Wear Red Day on Friday 4th February 2022. This is a very good and important charity who not only save lots of young children’s lives but also put a smile on their face with things such as a Katie Bear teddy.
Smaller charities like CHSF aren’t noticed as much and they should be because they are incredible. Thank you so much for everything.
Chelsea Holder, mum to heart warrior Evie
Wear Red on Friday 4th February for children like Evie and raise vital funds and awareness of congenital heart disease.
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