Evie’s Heart Journey

18/10/2025

October 2022, 2024 and 2025 ❤️

29/09/2025

It is World Heart Day today ❤️

Most people see the heart meaning love. However for our family, the heart is life. Evie’s original heart was in heart failure since she was 4 months old. She was placed onto a mechanical heart for 16 months. Then she received a new donor heart in June 2024. This heart came from a very special little person. We don’t know a lot about Evie’s donor family. But we do know that their child saved Evie’s life with a heart transplant. There is no greater gift.

Everyone takes life for granted sometimes. But when you see the difference a working heart does, you are grateful for so much more in life. Grateful to Evie for living and holding on especially in those tough times where she might not have made it. Grateful to the NHS Freeman team for helping her at all costs to keep her alive. And finally, grateful for the donor family and their precious child who saved Evie’s life with organ donation. 🫀🩷

Sign up for organ donation below and register your decision.

https://www.organdonation.nhs.uk/register-your-decision/

23/09/2025

We were honoured to be invited to the Young Heart Hero event in London with British Heart Foundation on Friday to celebrate lots of amazing heart heroes.

It was fantastic to be surrounded by so many inspiring young people and the event was great fun. The kids even done a real science experiment looking at DNA with the brilliant scientists at BHF 🧑🏼‍⚕️

British Heart Foundation

22/09/2025

It is Organ Donation awareness week starting today.

We are extremely lucky to live life and see what the world has to offer. Evie has went through so much and still does in post transplant life but she is smashing it and we are fortunate that her gift came from a wonderful family who chose to donate their child’s beautiful heart. It is the gift of life, literally.

There are so many people waiting for that call, so please share and spread awareness this week for those who are still waiting for that gift. You never know who it could save in that moment 🩷

https://www.organdonation.nhs.uk/register-your-decision/

20/09/2025

May 2023 ➡️ September 2025

Anyone who either knows us well or followed our page from the start of the Berlin Heart journey will remember Evie’s love of Shrek.

We were in London yesterday and today for a special event so we had to make the most of our trip and visit Shreks adventure. It was something we used to say in hospital ‘when you get your new heart, we will go there’. Amazing to now tick this off 💚

14/09/2025

A beautiful day at the Black Horse in Beamish celebrating all the children who have been on a Berlin Heart in the past 5 years.

It was an emotional and joyful day watching many children who are now living life thanks to their amazing donors. It is important though to credit the Berlin Heart is a machine that saved Evie’s life and gave her the extension needed to wait for the offer. She would not be alive without this machine. We are fortunate to live in the UK where we don’t have to pay upfront for NHS healthcare.

There is an amazing team behind the Berlin Hearts/VADs, it’s not just a machine that is easy to manage. There are VAD specialist nurses, the lead VAD Consultants, the surgeons who surgically implant and explant them, the Berlin Heart team themselves. There is so much to them that I still don’t understand despite 16 months of Evie living with one.

It was amazing seeing so many familiar faces both staff and families and it is a unique club to be a part of but we have met some wonderful people from the journey and they just get the situation more than anyone in day to day life ❤️🫀

04/09/2025

One year on. The difference is amazing. She has lost that steroid hamster face and looks like such a big girl going into Year 2.

I’ve been so proud of her, I was anticipating lots of tears going back but we have had none so far 🥹

31/08/2025

Well done to my lovely husband and Evie and Theo’s daddy who smashed the Boro 10k this morning and has helped raise over £1000 for Red Sky Foundation. 🩷

If anyone else would like to donate to an amazing charity then the link is below. 🥰

https://www.justgiving.com/page/davephilrach10km?utm_medium=FR&utm_source=CL

30/08/2025

I am sharing this for my husband and Evie’s daddy! He has been on a weight loss journey since May and has already lost 31lbs which is such an amazing effort. Part of the reason for this journey is to complete the Middlesbrough 10k tomorrow as well as improving general fitness and wellbeing.

This is a big challenge for him and any donations would be truly grateful. Him and his friends are raising money for Red Sky Foundation which are a fantastic charity who have supported us so closely 🫀

We are in a position to start giving back to all these wonderful charities so we want to start completing more challenges and this really is a big challenge for my husband so we appreciate your support ❤️

Help raise money to support Red Sky Foundation (UK)

27/08/2025

Some of recent life 🩷

Truthfully it has been a challenging school holidays, Evie has been in good health but psychologically the toll of hospital life is starting to show in anxiety, not wanting to leave the house and being quite distressed before we go somewhere. When arriving then she relaxes but even trips to the park or somewhere are a challenge currently. We are managing it okay and I feel like we are making some progress but I think with anxiety and psychology it’s not something that is ‘fixed’ but that there will be easier days and harder days.

I am hoping that returning to school will help with this as well as strangely enough this 6 weeks holidays is the longest period of time since she was 3 that she’s been at home. Like adults, when you have school/work to keep you busy it’s easy to ignore worries but when you have that time to reflect it is such a huge deal.

We have had plenty of lovely days out though especially when the barrier of leaving the house is jumped 🥰🩷