Evie’s Heart Journey

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Evie’s Heart Journey

Dilated Cardiomyopathy - Berlin Heart - Heart Transplant 🫀

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03/09/2026

Year 3 💚

Scrolling through each year of Evie’s first day at school. The last image she was getting worse in heart failure but still had so much joy.

I feel like this year she really is looking the most grown up and growing into her true self. I am forever in so much debt to the donor family who donated their child’s heart to Evie. They have given us extra milestones like today. And we hope that it continues for years to come 🙏🏻🤍

29/08/2026

I am aware it’s been a little while since I’ve posted an update. Mainly because of busy life and also not having too much to say (thank goodness).

Evie is growing absolutely amazing in her weight and height. Poor girl gets frequent growing pains as a result of this 🥲

She had her two year post-transplant check up on the 10th with her annual CT scan. The usual checks were all fine. Her CT did not work in terms of getting the best images however the images they did see showed no concerns. We await her next clinic to see if they want to repeat it for better imaging or to just leave it till next year which is also a possibility. Ideally I would prefer to just leave it as Evie hates cannulas but we will do whatever the team tell us as they are the best!

She also now can have 8 weeks in between appointments which is just crazy. It feels like far too long but slowly but surely I am getting better at enjoying the time off 😆

It has been a lovely 6 weeks holidays and I cannot believe next week, Evie will be going into Year 3! Each year we get is another huge milestone 🤩

09/07/2026

It’s such a lovely time for the children at school currently. Evie had her parents evening as well as her sports week with the schools first ever sports day.

We are super proud of Evie regardless but hearing how much progress she has made in this past year academically is absolutely unbelievable. She is at age related requirements for almost everything even though she started the year behind. Maths especially was a tricky subject for her and we were told that she has made immense progress in this. A normal school year teachers say you would advance 3 stages, Evie though has advanced 8 stages 😍

This is also hopefully reassuring for those children who were transplanted young and if you aren’t sure whether to hold them back. Evie didn’t stay back a year despite missing 18 months of school. She is with her age group and has managed to catch up. The resilience of these children means they are able to progress so much quicker through grit and determination 🙌

24/06/2026

Just a day after her 2nd heart birthday, Evie celebrates her 7th birthday ❤️

She had a rough weekend and Monday with a throat infection. She had her clinic on Monday as well so knew it was a good time to check her over, heart is working beautifully still. Initially believed to be viral infection until her blood results such as CRP being 173 and other infection markers very high 🤒 so she is on a course of antibiotics but has picked right up since then and managed to get back to school today to celebrate her big day 😍

Such a pleasure to be able to celebrate birthdays. Each one is another one with us at home living her best life 🥳🤩

23/06/2026

Two years since the most life changing moment to date for our family.

Happy two year heart transplant birthday to my baby girl Evie 💚

One precious family said goodbye to their precious child forever and gave consent to donate their organs to other children waiting for their lives to be saved. One of these organs was a beautiful new heart for my daughter Evie who waited 16 months for an offer. She battled nearly 5 years in heart failure and the day before her 5th birthday that call changed our lives forever.

A heart transplant is something you cannot comprehend they can do this day and age. It sounds crazy, yet Evie lives and continued to grow and thrive. Post transplant life certainly comes with challenges that cannot be minimised like infection risk and medication side effects. However, this brave decision for organ donation means she doesn’t live in hospital. We can have family days out, trips to the park, life at school and all the many things in life we take for granted. ❤️

I can’t ever repay that brave family for this decision. I can only make sure that Evie has a happy fulfilling life with her family. This special little person in heaven is also a part of our family now and that makes life so precious and that you have to make the most of every moment in life. Thank you for giving my little girl this chance, I will forever think about this family on this heartbreaking day for them as well 🤍🪽✨

11/05/2026

Life the last month or so 💓

Another great clinic today. The anxiety never goes but seeing all the team so happy gives me that reassurance that it’s okay to feel optimistic 🥰

Weight is going up, height is going up. Great ECHO, great ECG. All bloods taken (did take 5 needles mind 🫣).

Her next clinic in 6 weeks will be the day before her 2 year transplant anniversary. I still truly can’t believe it, especially when hospital life doesn’t feel like it was long ago. Forever grateful, and Evie’s donor angel is the reason for these amazing moments 🪽❤️

Address

Middlesbrough

Website

https://gofund.me/57a00348

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