Meet Evie – An inspirational CCF super hero

We would love to introduce to you all our newest CCF Family the beautiful Evie from Teesside. This very brave 4-year-old little girl was diagnosed with Dilated Cardiomyopathy when she was a baby and is now urgently waiting for a heart transplant.

Evie has been living in the Children’s Heart Unit of the Freeman Hospital for one full year to the day! Each day they have been praying for her gift of life, a new heart. She is fitted with the Berlin Heart which is a method to help keep her alive whilst waiting for her much-needed transplant. Sadly, Evie will not leave hospital until she receives her gift, however this daily hospital life does not stop her from living her life to its fullest, her family do all they can to keep her smiling, she has the most loveable smile and infectious personality.

Evie became very poorly and was admitted to hospital on the 15th of February 2023, then on the 6th of March 2023, Evie underwent a transplant assessment and was moved from routine list to urgent list as a result. Her heart was so sick that they made a national call out to see if there was a heart donor available for Evie which unfortunately there was not.

Her health began to deteriorate further and on the 11th of March the PICU team decided to operate and put her on an LVAD (Left Ventricular Assist Device) and since this date, this incredibly brave little girl has shown so much strength and resilience, her parents doing their very best to not let her see the worry, pain and heartache on their faces…. desperately waiting for ‘that phone call’ at the same time knowing it would mean a family losing their most precious gift to save their little girl

All our supporters have contributed to us financially supporting this inspirational family, giving them a little breathing space, and taking away their financial burdens to allow them concentrate fully on Evie, making happy memories.

A special thank you to Evie and her family for allowing us to share their story, to all our supporters, volunteers, staff, trustees and of course our two angels, we will continue to do the work we do in loving memory of the two beautiful Cookson Brothers.

A Quote from Evie’s Mam:

Evie was born via normal/natural delivery. Typical Evie style was not giving me any sleep from the moment she was brought into this world! Only around 4 hours in labour and she was born on her due date weighing 8lb 1oz.

As far as we know, her heart was normal at birth. However, you do not have ECHO scans at birth, only a routine listens for abnormal sounds. Evie’s heart wouldn’t have sounded abnormal anyway with DCM. So, I do think a routine baseline scan could prevent so many conditions that are undetected getting worse.

However, the amazing NHS stretched for funds as it is it is a hard ask and we are already lucky to live in a country where healthcare is free.

A new heart would mean that Evie can come home to us. This journey has split our family in half, yet we still get these lovely smiles from Evie”

‘We had been in hospital for some time when we decided to apply for The Charlie & Carter Foundation. We have heard great things from other families and knew financially it would be beneficial for us to apply for this grant because ultimately, we don’t know how long we will be here. They were all amazing helped us with any queries and ultimately helped us out big time with a massive reprieve for a few months whilst we continue to see where we are going. We are so grateful for the support especially when not many charities think about long term families and bigger grants, so this has helped massively.’

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