She was a helpless baby all alone in the world. But Nellie-Mai was about to teach us what courage was all about. By Sarah Evans, 49
I gazed at the little figure in front of me, her chest rising up and down. She was covered in wires and tubes and hooked up to beeping machines.
But I could tell she wasn’t giving in.
‘She's a real fighter,’ I said to my husband Jeff.
But the baby we were visiting wasn’t ours.
Jeff and I were experienced foster carers. We’d fostered many children over the years, and adopted our son, 11-year-old Tom.
We had been called to the hospital by a social worker to act as family for this little girl because she had no one else in the world.
At just two months old, she’d been abandoned by her parents, and her birth mother had only been to see her once before contact had stopped.
‘She’s extremely ill,’ the social worker told us. ‘We don’t think she’s going to make it. But we want her to have someone.’
We understood. They didn’t want her to be alone in her final days.
Jeff and I knew straightaway what we would do. Come what may, we wouldn’t leave that little mite to die alone in a hospital bed.
So we stayed with her, and as I stroked her tiny hand, I prayed there might be some sort of a miracle.
Because she didn’t have a name, the nurses had chosen one for her.
‘We’ve called her Nell,’ one told us.
It suited her and it stuck.
Nell had already suffered four cardiac arrests, caused by a heart condition called dilated cardiomyopathy.
But she’d survived and battled back each time.
And over those next weeks, Jeff and I couldn't believe how such a tiny human could be so strong.
But at times, I was floored by her fragility.
One day, the sight of her asleep, wearing nothing but a pair of donated shorts, made me break down in tears.
'We want her to have someone'
‘Don’t you worry,’ I whispered to her. ‘I’ll come and see you every day.’
Over the next six months, I kept my promise.
While Jeff stayed at home to look after Tom and our daughter Elouise, I made the 50-minute journey from our home in Lancashire to the hospital in Manchester.
Then, one afternoon we got a call from the hospital.
‘You need to prepare for the worst,’ we were told. ‘Nell's condition has deteriorated.’
I said to Jeff: ‘I'm not letting her die alone.’
I was determined to be with her and hold her hand when she took her final breath.
But miraculously, she pulled through, and the doctors were as stunned as we were.
Every day I visited, I fell in love with her a little more.
Then, during one visit, I overheard the nurses talking about her.
‘It's so sad she doesn't have a family,’ one said. ‘It means she can't be put on the transplant list.’
Nell needed a new heart, but I had no idea that children without parents weren't eligible to join the waiting list.
And right then, I made a decision. We would adopt Nell and give her a chance at life.
When I told Jeff, he said: ‘You’re absolutely right.’
Even if her chances of survival were slim, at least she’d have a loving family around her.
In time, Nell was moved to the Freeman Hospital in Newcastle. So we moved to Cumbria to be closer to her and we got stuck into the adoption paperwork.
Less than a month later, a heart was found that was a match for Nell.
We were so grateful to the family of the donor, a seven-year-old girl who’d died in a car crash.
Nell underwent a transplant and it was a success.
And, soon after, the adoption was finalised and we officially named our little girl Nellie-Mai Evans.
A few weeks on, we were allowed to take her home.
‘You’re right where you belong,’ I told her as we settled her down in our room that night.
Of course, it was challenging caring for a baby with special needs, but gradually Nell grew stronger. And, two years on, we went on our first family holiday to Greece.
Nell loved it, but after we returned home, we found two lumps the size of marbles on her neck and armpit.
'You're a real-life superhero'
We had them checked out and then Nell’s doctor dropped a bombshell.
‘She has leukaemia,’ he told us.
It was devastating.
‘I don’t think I can bear seeing her suffer in hospital again,’ I said to Jeff, in tears.
We tried to stay strong, but Nell became critically ill during treatment and suffered a stroke.
Watching her fight for her life all over again was almost more than I could stand.
Then she slipped into a coma — and tests revealed something heartbreaking.
‘I’m afraid Nell is brain dead,’ her doctor said. ‘There’s nothing more we can do.’
On Mother’s Day, we prepared to say our final goodbyes.
I sat holding Nell’s hand, convinced I was sharing my daughter’s final moments.
Then I noticed something.
At first I thought I was seeing things… but then I saw it again.
Nell’s lips were moving and I was sure she was mouthing the word: ‘Mummy.’
‘What’s happening?’ I asked the doctors.
They were as baffled as we were.
But they were certain of one thing. Once again, our amazing little girl was fighting back!
Ten days later, she woke up and Jeff and I were overwhelmed with joy.
She’d beaten the odds again.
‘You’re a real-life superhero,’ I told Nell.
She had developed epilepsy after her stroke, and we had to monitor her constantly as she slept.
But for the next 11 years, Nell was the funniest and bravest child I knew.
Her secondary school in Sedbergh was one of the few willing to take her, and she loved it, making loads of friends and bossing the older boys around in the playground.
She loved watching TV and learnt to ride a bike.
Elouise nominated her for a WellChild Inspirational Child of the Year award, and we were thrilled when she won and got to meet Prince Harry.
I watched her collect her award at the Hilton Park Lane hotel in London with tears rolling down my face. She even asked Prince Harry if he’d make her a balloon animal — and he did.
But then she let go of it, and it floated towards the ceiling.
‘Are you the clown?’ she asked him. ‘Please could you get my balloon down from the roof?’
I gasped but Harry laughed, and that set us all off.
I thought: _That’s our Nellie-Mai!
_
She brought joy wherever she went and nobody could stop her.
But when she was 15, our world turned upside down.
She had another cardiac arrest and ended up in intensive care.
We’d been through it before and I told Jeff: ‘We’ll get through this again.’
But this time was different.
Nell’s lungs filled with blood and doctors discovered another lump.
They did their best for our girl — and Nell even made it home for a bit — but she began to have seizures and went back into hospital.
Then one morning as we walked into hospital to see her, a nurse approached us.
‘Can I speak with you?’ she asked.
She guided us to a room and said: ‘I am jso sorry, but Nell has passed away.’
She’d died from organ failure.
‘It can't be true,’ I said.
She’d beaten the odds so many times before, we thought she was invincible.
But now she was gone.
Our family felt shattered, but we were comforted by the outpouring of love we received from friends and strangers. It made us realise just how many lives Nellie-Mai had touched.
She was an inspiration and we felt blessed that she’d come into our lives and shared it for 15 years.
Now we miss her every single day, but the joy she brought to us will never ever leave us.
When I first saw that little baby, fighting for her life, I could never have believed just how much happiness she’d bring us.
But she did.