***Update 24th May 2022***

It’s been a while since our last update, lots going on, but we’re so proud to announce Evelyn won the Young Heart Hero award last September!! Evelyn has been well since the last update (apart from having her pesky tonsils removed), however there is an issue with her defibrillator and she needs a small operation to fix one of the leads. That shouldn’t keep her down for long! We are still here and still fundraising, and taking part in an event for the Queen’s Platinum Jubilee to raise even more funds.

Please keep sharing and donating.

Lots of love, 

Emma, John & Evelyn

***Update 17th September 2021*** 

Exactly a year on from the day everything changed, Evelyn is getting on as well as she can but trying to keep her away from germs is impossible and she had another recent stay in hospital when her defibrillator fired due to having loads of respiratory viruses which her heart couldn’t cope with. Her medication has been increased again and we’re having regular check ups with the consultants. Aside from the medical stuff, Evelyn truly is a superstar. She’s doing brilliantly at nursery, now talking full sentences and even toilet trained before the age of 2 and a half!!! We’ve moved to a house by the river and even bought a boat!  If I it wasn’t for what has happened we probably wouldn’t have done it. I think it puts things into perspective that sometimes you’ve got to make the best of what you have and turn it into your idea of perfect.

We have a big day coming up on the 29th September, it’s the British Heart Foundation Heart Hero Awards. Evelyn has been shortlisted for the Young Heart Hero Award, so we are very excited and have everything crossed. 

There is a lot we want to get involved in relating to genetic testing, just got to figure out how to do it but we’ll get there.

Please keep donating and sharing.

Lots of love,

Emma, John & Evelyn

xxx

***Update 18th March 2021***

Evelyn has been nominated by the British Heart Foundation for their Young Heart Hero award! She is making us so proud each day with her strength and resilience she continually demonstrates.

She has recently been in hospital again with a stint in ICU following her defibrillator shocking her heart 10 times over a 3 day period. It was horrendous as a parent to witness this, but the trauma it brought to Evelyn was very apparent. It is heartbreaking to see such a change in her character, but it’s understandable as she’s much more aware of what’s going on given that she’s almost 2 years old.

Her medication has been increased which should now prevent the defib going off, but unfortunately the biggest test will be when she gets a high temperature again and it’s very frightening as it’s not something we can anticipate.

We are overwhelmed by the amount raised so far, but we need to keep it going as so much more research is needed particularly for rare heart conditions. There must be a cure. John has also tested positive for the gene mutation so he’s under cardiology having ongoing tests but luckily so far he’s been asymptomatic, and not Type 1 like Evelyn.

We are working hard in preparation to put forward a petition to parliament in the future to request genetic testing for newborns to identify those who have underlying conditions, so more can be done to save lives, and to try and stop the agony for parents where it’s sadly too late.

Our plans for April are to take part in the BHF 100km walk which Evelyn will participate in too, maybe not the full distance! 

Thanks for all your support.

Lots of love,

Emma, John & Evelyn

The 17th September 2020 is a date we will never forget. The day started out as normal, but upon coming home from nursery it was clear that our 17 month old beautiful little girl Evelyn had become seriously unwell very quickly.

She was seen immediately in the A&E department at Leicester Royal Infirmary and within minutes I was being rushed off to a room on my own whilst emergency treatment took place to save our daughters life. Her heart rate had increased to 280 bpm and she was at high risk of having a cardiac arrest. They gave her a drug called Amiodarone to bring her heart rate down and back into a normal rhythm and thankfully it worked. At this point it was unclear what had caused this so she was transferred to the Paediatric Intensive Care Unit at Leicester Glenfield Hospital which specialises in cardiology.

During the first few days in hospital many tests on her heart were were carried out to determine a diagnosis, but it was the Ajmaline test that confirmed the consultants suspicions of Brugada Syndrome, which is a rare but serious condition that affects the way electrical signals pass through the heart. It can cause the heart to beat dangerously fast. These unusually fast heartbeats, known as an arrythmia can sometimes be life threatening.

Between the amazing consultants and staff at Glenfield and Birmingham Children’s Hospital who have only come across a couple of cases in a person so young during their careers, it was agreed that the best course of action was for Evelyn to have open heart surgery for a Subcutaneous Implantable Defibrillator with a pacemaker function fitted, plus lifelong medication of Quinidine. The operation went well and she came home a few days later.

We are slowly coming to terms with what has happened, and we are hoping that Evelyn will lead a mostly normal life with the defibrillator as her guardian angel if the medication fails to do its job, but this has opened my eyes to the fact that Brugada Syndrome accounts for around 8% off all sudden cardiac deaths in the world, and in the majority of cases is only found discovered when a person’s life has sadly been lost. At present there is no cure, so I want to raise a lot of money and awareness for Brugada and other rare heart conditions so research can be done to stop anyone else from losing a loved one.

We have a long road ahead of us as we are waiting for Evelyn’s genetic test results to come back, and if positive then other family members will be tested, so it’s an anxious time for all involved.

Anyone who is fortunate enough to become a parent wants their child to change the world, and maybe this wasn’t what we had planned, but she will change the world for sure!