Nora's Story

“Nora was a normal happy toddler until everything changed very suddenly. At nursery, her heart was beating really fast and she was very lethargic. We rushed her to the children’s hospital where our world collapsed.

“In the next few hours, she had three cardiac arrests. Nora’s heart was incredibly poorly and they didn’t know if they could save her.

“The doctors and nurses were heroic and managed to stabilise her. The PICU team was beyond incredible. This was such a horrific situation but they helped us stay strong and looked after Nora so well, especially Dr Andreas who saved Nora’s life.

“We were told that the only thing that could save her was a life support machine called ECMO that was only available in Glasgow but transferring her was very risky. Thankfully she made it there and surgery was a success.

She was on ECMO for a week, unconscious and intubated, which was terrifying but every hour and every day were a victory. We found out she had suffered a stroke following her heart failure. When she woke up 12 days later, we noticed that she was only moving her right side.

Nora had suffered a stroke following her heart failure. She had to relearn everything again - eating, talking, walking...

- Marie, Nora's mum

“Back in Edinburgh, she had to relearn everything like eating, talking, walking and using her left arm and hand. The progress she made each week was spectacular! We couldn’t be prouder.

“All this happened just before Nora’s second birthday so while her young age allowed her to recover quicker, it was also incredibly difficult at times to explain to her what was happening.

But the PICU, Borthwick, Physio and OT teams were so great and really helped her to be a toddler again. She was given a special chair that allowed her to go around the ward and to the playroom. She could also go to the garden which was her first time outside in weeks. Ronald McDonald House offered us a room in Glasgow and then in Edinburgh to allow us to stay with Nora at all times which was incredible.

“ECHC also helped us every step of the way, from day one in intensive care where someone came to play music with Nora. We had visits from singers, musicians, Indian dancers, artists and magicians which was so lovely both for Nora and us.

“Once she was allowed out of the ward, we just loved going to the Hub to play almost every day, chat with the team and take part in the many activities offered like Therapets or sessions with the zoo.

“Nora was discharged in early September after spending five months at the hospital. Her future is looking so bright and we’re so incredibly grateful.

“While she will remain a cardiac patient for the rest of her life, things are now under control and we have a wonderful team looking after her. Her heart keeps getting stronger and she is now walking and running! Onwards and upwards!” – Marie, Nora’s mum

With your help, ECHC can be there for every child like Nora facing a life-changing hospital visit. If you can, please donate today.