Evie’s Heart Journey

18/03/2026

My little superstar.

Smashed clinic yesterday. All good in all checks. Grew in height and weight which is always a delight. We will be stopping her antibiotic in April-September as she is doing well from an infection point of view. She is hitting so many milestones in school with her maths and reading. She had her school show this afternoon which she’s been so excited to show us, it really is wonderful to see her thrive so much 🥰

We’ve hit a few painful anniversaries such as 3 years since Evie’s big deterioration, cardiac arrest, Berlin heart operation and PICU. To see her now loving life is just a dream come true. It’s not a cure by any means and a lifelong condition but we are so grateful to have these moments thanks to her precious donor 🤍

08/02/2026

A huge thank you to those for posting onto the Taylor Mania page for Evie to get the hat. Evie was a very lucky girl and picked to go on stage to get the hat 🥹❤️‍🔥

It was a fantastic show, for any Taylor Swift fans out there I recommend it highly 🫶🏻

05/02/2026

I am aware this is probably the longest time without any real update. But it truly is lovely as it has been such a normal busy time with work, school and lots of fun.

Evie is coming on so well with school, her reading, writing and maths. It is amazing watching her master skills all the time.

We had clinic on Monday which went good. No changes to her heart. She also seen the immunologist and she will stop her long term antibiotic in the warmer months and just be on this in winter time. Small changes to her medication dose. She is growing amazingly both weight and height.

We are truly lucky to have the life with Evie. And that is all thanks to her precious donor who beats strong for Evie 🤍

01/02/2026

I wanted to ask our followers for a big favour. We are going to this Taylor Swift tribute next Sunday. Evie is a big swiftie and has watched the concert on Disney+ and loves her songs. Could people please comment and tag Evie’s page for her to be considered for the 22 hat. I know that she would love this so much. The more comments means they are likely to see her story ❤️‍🩹

She didn’t get to see Taylor at the Eras tour as she was waiting for her transplant for 18 months so hopefully this will be the cherry of top for Evie 💞

Thank you in advance 🥰

✨ Bolton | Billingham ✨

You have less than a week to get your 22 hat nominations in!

Once you’ve nominates drop a comment on this post to let us know you’re coming along ❤️✨

31/12/2025

It has been a lovely 2025. We have made some amazing memories as a family and had numerous breaks away seeing new places.

Over the Christmas period we had a few repeat bloods as a result of the recent flu causing her tacro levels to bounce around a bit (very normal and expected). But they are finally back to normal and we are ending 2025 well and at home as a family 👏🏼. I hope 2026 brings stability and good health for us.

I hope everyone’s new year is also filled with this, I truly hope and wish for good health and no dramas, especially for those living in hospital waiting for a transplant or those battling with chronic conditions.
❤️❤️❤️

24/12/2025

I just want to wish our followers the biggest Merry Christmas 🎄

It truly is wonderful and a pleasure to have Evie home for a second year living her life with us. Transplant life can be tricky with infections and many other risks however we get our life at home and not living in hospital. We still miss our hospital family and for all those living in hospital or finding themselves in hospital over Christmas I truly hope you have a stable Christmas with lots of joy in it 🙏🏻

My biggest thoughts go out to Evie’s wonderful donor and their family who face their second Christmas without their child. We are truly blessed because of them making that brave choice. For every experience we have with Evie, we also have this special little person on board with us too and will forever honour them ❤️

19/12/2025

Evie’s special Christmas picture ❤️

For those who have messaged, Evie is recovering well from flu thankfully so hopefully we will have a Christmas Day bug free 🙏🏻

15/12/2025

In true Evie fashion, she has today tested positive for Influenza A days after her vaccine 😫

It is fair to say that it is very nasty but also different from last year. She is coping a lot better but needs a prescription of Tamiflu to get her through it again.

Wear a mask if you are unwell! It’s not difficult 🙄

It is embarrassing the way grown adults are behaving over the idea of wearing a mask. People want you to wear masks if you have bad cold/flu symptoms to PROTECT others from catching it. It is not about protecting yourself. I spend everyday in this season scared because I know how selfish people are and don’t care about spreading bugs around.

If the idea of helping a large group of our most vulnerable people is so abhorrent then it truly identifies you as a selfish member of your society.

In more positive news, Evie today had her first injection without me in schools which was her flu vaccination. I am so proud of her and hopefully this will give us a bit of safety from those idiots who are willing to spread germs carelessly 💕

11/12/2025

It is embarrassing the way grown adults are behaving over the idea of wearing a mask. People want you to wear masks if you have bad cold/flu symptoms to PROTECT others from catching it. It is not about protecting yourself. I spend everyday in this season scared because I know how selfish people are and don’t care about spreading bugs around.

If the idea of helping a large group of our most vulnerable people is so abhorrent then it truly identifies you as a selfish member of your society.

In more positive news, Evie today had her first injection without me in schools which was her flu vaccination. I am so proud of her and hopefully this will give us a bit of safety from those idiots who are willing to spread germs carelessly 💕

08/12/2025

Evie had her last scheduled clinic of 2025 today. She had a little bug over the weekend so was a bit apprehensive incase anything was up. My anxiety peaks so high the coming days before clinic but her ECHO and ECG are still well. Took a few goes to get Evie’s bloods (nothing new unfortunately) but Evie managed it so well as usual so we just have to wait to hear if those are also okay.

We also said goodbye to our lovely consultant Abbas who is leaving the Freeman. He has been there since Evie’s diagnosis in 2019 in heart failure and also post transplant 🥺

He is such a wonderful person and has been there for all our family over the years and done amazing to know Evie and her clinical status so well to give her the best chance living at home until her time for admission came in 2023. It is not often you see many doctors who give you that time to talk things through and ask any questions (a bit too many at times he would agree 😂). We are so sad but wish him the best of luck in his new opportunity 🥰

30/11/2025

I want to say an absolutely huge thank you to everyone that supported the Christmas bedding appeal. It has been so much more than I ever imagined. We will be on BBC Look North tomorrow to talk about it 🎄

I took everything up this morning but stupidly didn’t take any photos today as there was so much to get into the hospital. However I took a photo last night of absolutely everything. We also headed to the annual CHUF Christmas party with us being in Newcastle which was so lovely to see so many familiar faces ❤️

We had 53 bedding sets that were given to the ward this morning so all 31 beds in PICU and Ward 23 will have a new bedding set and others for their bedding collection. We also raised £1730 altogether which was distributed into over £500 worth of Christmas pyjamas in all sizes ranging from newborns up to 14 years old all different designs.

I also had a miscellaneous bag of things as some people were kind to donate lots of other bits like teddies, toys etc.

I also arranged 10 gift bags with the following in:
1 x Stitch hot water bottle
1 x Christmas activity pack
1 x Christmas blanket
1 x £100 sainsburies voucher

These were aimed at long term families who are waiting for transplant or having a difficult hospital journey. This was once us and I know how much things like a voucher to help with food/clothing can help a lot ❤️

This would not have been possible without everyone who supported with donations of bedding, items and money towards everything else that was bought.

Thank you ❤️