Dear friends,
As lots of you know, our Minnie suffers with a rare and complex form of heart disease, Ebstein's anomaly, with all associated defects (she has an extensive medical history!). Minnie’s conditions are life-limiting, and she has spent lots of time in hospital seriously unwell; she has endured 17 procedures including 3 major heart surgeries to date.
Two years ago, our brave daughter Minnie underwent two major heart surgeries at UPMC Children’s Hospital of Pittsburgh with the world-renowned Da Silva team. After years of being told it would never be possible, it was nothing short of a miracle that the Da Silvas were able to create Minnie a tricuspid valve using nothing but her own heart tissue. The operations gave Minnie a second chance at life allowing her to smile, laugh, play, go to school, and enjoy being a child again.
However we’ve been devastated to learn that the repair is failing and intervention is once again essential for Minnie’s survival. Since Minnie is symptomatic- breathless, cyanosed, extra fatigued, and there is turbulence (tricuspid regurgitation) and significant gradient (tricuspid stenosis), and right-to-left shunting on the ASD (blood leaking back and forth a hole in top two chambers of her heart). Dr DaSilva has determined that Minnie needs another open heart surgery to resolve the issues with her newly created tricuspid valve. They say the sooner she can return to America, the greater the benefit will be for her.
Minnie urgently needs further specialist tricuspid valve repair surgery back in Pittsburgh with the same surgical team who helped to save her life before.
We will do absolutely everything we can to get her there, but we cannot do this alone.
The total contracted cost of surgery is £110,800 which just covers the cost of the repair and preliminary testing. What is not included is flights, insurance, accommodation, medical oxygen, food, etc.
Today, we are launching this community fundraising campaign dedicated to helping Minnie get back to America for the life-saving treatment she desperately needs, and very much deserves.
Minnie’s journey
Minnie has already shown incredible courage throughout her 8 years of life.
Despite everything she has faced, she continues to amaze us every single day with her strength, resilience and beautiful spirit. She is hilarious, kind, determined, and loved by so many people around her, she is truly one of a kind and we love her infinitely.
Watching your child go through heart surgery is something no one can prepare you for. Hearing that the repair is failing and that she now needs another major open-heart surgery has hit us all hard.
However, we know there is hope.
The specialist team in Pittsburgh have already given Minnie a precious two years of life, memories and opportunities she may not otherwise have had. If you can help us with your time, love or a donation we will ensure all of it goes towards preserving the life of our precious little Minnie.
How You Can Help
Every donation- no matter how big or small- will help move Minnie one step closer to the surgery she so urgently needs.
If you are unable to donate, you can still make an enormous difference by:
- Sharing this page
- Sharing Minnie’s story
- Supporting fundraising events
- Help us spread the word
Every share and every like makes a massive difference.
This campaign is about bringing together a community to help save our little girls life.
Where the Money Will Go
Funds raised will cover the exact cost of her specialist heart surgery.
It does not cover flights to America, accommodation during treatment, follow up care, associated medical and travel expenses.
We are taking a huge gamble as every day over the contracted 11 day stay costs £6,000 just to be in the hospital bed!
We will continue to provide updates throughout Minnie’s journey and share every milestone with everyone supporting Team Minnie.
From the Bottom of Our Hearts
Thank you for taking the time to read Minnie’s story.
Your kindness, generosity, messages, shares and support mean more to us than words could ever express.
Together, we hope we can get Minnie back to Pittsburgh and give her the opportunity of a future that she so deserves.
Thank you for being part of Team Minnie (L)
For more on Minnie’s story, or to follow her journey on social media/ share her story to inspire others:
If you would like to reach out or make contact, please do not hesitate to drop us a message.
(Pic from UPMC Children Hospital of Pittsburgh, July 2024- Minnie, mummy, daddy, and world renowned specialists, Dr DaSilva and Dr DaSilva- our heroes!)