Dan and June are doing the Great North Run in memory of Ava
Dan and June do the Great North Run in memory of Ava
My Story
Ava Fegredo was born on 27th November 2020 and was the first child of Dan and Sonia. She was healthy at birth.
When she was 5 weeks old she became suddenly ill and had to be taken to intensive care at Manchester Children's Hospital. Ava was diagnosed with dilated cardiomyopathy, a form of heart failure where her heart did not pump blood effectively. No genetic cause was found but it was thought that it could have been caused by a reaction to a simple viral infection.
Ava improved initially and was discharged home with medications to help her heart but she deteriorated again at around 5 months old. To keep her alive she needed to be transferred to The Freeman Hospital in Newcastle to have specialist treatment. She underwent a number of major cardiothoracic operations to fit a Berlin Heart - a large mechanical pump that was plumbed into her heart. It would help pump blood around Ava's body as her heart was too weak to support her organs.
Ava was listed for a heart transplant as this was the only way she could ever be free of the Berlin Heart and leave hospital. She initially did well and was able to grow and develop, but with these complex interventions there was a huge amount of risk and she tragically died secondary to complications associated with the Berlin Heart.
She passed away in our arms a few days before her 1st birthday.
Ava was an incredible soul and she fought so hard, every day against the odds. She was full of life and happiness, always smiling and laughing despite all she had been through. We call her our Warrior Princess.
CHUF provided wonderful experiences and activities for the children and parents on the heart unit. It gave us wonderful memories that we will always cherish.
Though the death of our daughter has devestated us, we look back on those times in hospital as a blessing. The incredible team at the Freeman made it so we were able to spend those precious extra months with our beautiful girl.
My mother June, and I are going to run the Great North Run in Newcastle to raise money for CHUF in Ava's memory so that other families can be supported through their darkest days.
Thank you for reading, any donations would be so gratefully received.
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See below videos and pictures of Ava and examples of CHUFs work.
Ava's Tiktok @avathewarriorprincess - A small collection of videos (some cute, some silly, some sad) we made with Ava from our time at The Freeman Hospital
https://www.tiktok.com/@avathewarriorprincess?_t=8bopERaX2DL&_r=1
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A Video of Ava with the Clown Doctors, funded by CHUF
https://youtu.be/N7LRiE7OzGo
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Target
£3,500
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Raised so far
£4,386
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Number of donors
138
My Story
Ava Fegredo was born on 27th November 2020 and was the first child of Dan and Sonia. She was healthy at birth.
When she was 5 weeks old she became suddenly ill and had to be taken to intensive care at Manchester Children's Hospital. Ava was diagnosed with dilated cardiomyopathy, a form of heart failure where her heart did not pump blood effectively. No genetic cause was found but it was thought that it could have been caused by a reaction to a simple viral infection.
Ava improved initially and was discharged home with medications to help her heart but she deteriorated again at around 5 months old. To keep her alive she needed to be transferred to The Freeman Hospital in Newcastle to have specialist treatment. She underwent a number of major cardiothoracic operations to fit a Berlin Heart - a large mechanical pump that was plumbed into her heart. It would help pump blood around Ava's body as her heart was too weak to support her organs.
Ava was listed for a heart transplant as this was the only way she could ever be free of the Berlin Heart and leave hospital. She initially did well and was able to grow and develop, but with these complex interventions there was a huge amount of risk and she tragically died secondary to complications associated with the Berlin Heart.
She passed away in our arms a few days before her 1st birthday.
Ava was an incredible soul and she fought so hard, every day against the odds. She was full of life and happiness, always smiling and laughing despite all she had been through. We call her our Warrior Princess.
CHUF provided wonderful experiences and activities for the children and parents on the heart unit. It gave us wonderful memories that we will always cherish.
Though the death of our daughter has devestated us, we look back on those times in hospital as a blessing. The incredible team at the Freeman made it so we were able to spend those precious extra months with our beautiful girl.
My mother June, and I are going to run the Great North Run in Newcastle to raise money for CHUF in Ava's memory so that other families can be supported through their darkest days.
Thank you for reading, any donations would be so gratefully received.
---------------------------------------------------------------
See below videos and pictures of Ava and examples of CHUFs work.
Ava's Tiktok @avathewarriorprincess - A small collection of videos (some cute, some silly, some sad) we made with Ava from our time at The Freeman Hospital
https://www.tiktok.com/@avathewarriorprincess?_t=8bopERaX2DL&_r=1
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A Video of Ava with the Clown Doctors, funded by CHUF
https://youtu.be/N7LRiE7OzGo
