Most people know our story . 

Our amazing Jake turns 6 on May 23rd , it’s a birthday he was seconds away from never seeing.  

Although he’s had cardiomyopathy his whole life , he’d been stable for years - and then almost out of the blue he stopped eating and started showing symptoms of end stage heart failure .  After trying to get him attention for the best part of a month,  jake was finally admitted to a cardiac ward where he periarrested , an echo showed his function had indeed worsened and his body was shutting down .  

My world fell apart and I will never forgive myself for not getting him the help he needed sooner.  

Fortunately the staff managed to get him stable enough so that he could be flown by the coastguard and CATS to Great Ormond Street , who saved him as a baby with two heart surgeries. It all happened so fast I didn’t even get chance to say goodbye to my baby daughter. 

It was very clear that by the time Jake arrived at GOSH his heart couldn’t he recovered.  He was ventilated as an emergency , I was told to prepare for him to not survive the day, but fortunately that broken heart carried on beating. He remained vented, sedated and paralysed and I didn’t know if I’d ever see him awake again. 

The following day , at the height of the covid pandemic , in London , 200 miles away from our family and friends we had a meeting with some people who’s faces I have still never fully seen .  Fortunately, we were given a lifeline by listing Jake for a heart transplant.  Unfortunately, he wasn’t well enough to wait without support and a couple of days later Jake had a 12 hour open heart surgery to fit a BI-VAD /Berlin Heart , which provided his cardiac output.  The surgery brought complications , and Jake suffered multiple pneumothorax (collapsed lungs ) and huge amounts of blood loss . He was so sick for so long his leg muscles just vanished and by the time he was stable he needed to learn how to walk again. 

The Berlin heart gave Jake an increased risk of stroke and his own heart rhythm was now in constant VF and VT , which was causing clots to form in the pumping chambers . It was getting desperate but at the same time I couldn’t bare the thought of another family losing their child at Christmas.  I wish with all my own heart there was another way. 

We spent Christmas on CICU , and the amazing staff worked so hard to give us a wonderful day , but sadly due to covid we couldn’t have Daisy with us.  We didn’t know if we’d ever be a family again. 

Then earlier this year , we got the call . 

There was an offer for Jake . 

The surgeon who performed Jakes operation was the surgeon who operated on him as a baby , he’s my actual hero- along with the superhero we never met.  

Jake is now a few months out of transplant , he’s back at school full time , he’s been swimming and we’ve even booked a holiday .  

The emotional scars of what we have been through run as deep as the physical scars & I don’t think I will ever be the same again, but GOSH has been there for us every step of the way. 

They saved him as a baby & they saved him again as a 5 year old.  We have so many people to thank from the transplant team to chaplaincy , everyone’s played such a vital part. 

That’s why this birthday we’d love it if you could make a donation for GOSH . 

And maybe get those stripes out again. 

Thank you . 

#gozebraforjake 

#thankyougosh 

#becauseofadonor