TO HER parents she is the world but to the world little Evelyn Nolan is literally one in 168 million.
Born with a genetic condition so rare it is thought only 42 people suffer from it, the toddler has defied the odds to survive.
Evelyn has brain damage as a result of severe intractable epilepsy and she is unable to lift her head or talk.
At her worst the two-and-a-half-year-old has fitted more than 300 times a day.
She has endured a collapsed lung and pneumonia as well as side effects from the mass of medication she takes including a blood clot in her heart and kidney stones.
And in March her parents Debbie, 39, and Elliot, 41, were dealt the most heartbreaking news imaginable.
Doctors said she was unlikely to survive longer than a few weeks.
Yet Evelyn is their ‘warrior princess’ and four months later she is back home with her fiveyear- old brother, Fergus, and her two cats.
Evelyn with her protective big brother Fergus
The youngster, whose condition baffles medics, is now writing her own medical history because no matter how bad it gets, she has bounced back with a smile on her face.
Her family are prepared for the unspeakable and know any moment they may have to say goodbye to their little girl.
But inspired by her tremendous courage and the support of paediatric neurology consultants and the G2 Neuro ward at Southampton General Hospital, they are determined to make every single moment a happy one.
Holding little Evelyn, who is completely entranced watching Disney’s Frozen, mum Debbie, says: “It has been so incredibly hard on us all to watch our bright happy girl be eroded by this incurable disease.
Evelyn at home in Southampton
“Throughout it all she has been so incredibly brave and we try and take our strength from her. We are in complete awe of her. She is incredibly stoic and her tolerance is phenomenal.
“We do not know what the future holds for our baby girl, we have no idea how long she will be able to win this battle to survive against the odds but we want to make the best of every day.”
Evelyn with her dad Elliot
Evie was born on December 24, 2011 and despite a slight facial palsy, she was otherwise healthy.
However aged three months she began having fits, holding her breath and turning blue.
The family, who live in Highfield, Southampton, went back and forth to Southampton General Hospital with weeks of monitoring.
Elliot, explains: “It was terrifying. You were just unbelievably tense all the time because you were waiting for the next one. It was like living on the edge of panic constantly.”
In September 2012, Evelyn was diagnosed with a genetic disorder so rare it doesn’t have a name – a Chromosome 2, p22.2 duplication which means she has an extra set of chromosomes in her genetic structure.
As a result she suffers from broad development delay, holes in her heart, acute reflux and severe intractable epilepsy.
Debbie, says: “It’s a very very rare genetic condition so rare nobody really knows what will happen to Evelyn.”
Despite the diagnosis, the anti-seizure medication prescribed in September 2012 started to work and she began to catch up.
However, devastatingly precious moments of seeing their daughter sitting on her own and standing unaided at the side of the sofa were short-lived.
Despite being fit-free for nearly a year, the fits came back in August 2013, but this time much worse with Evelyn suffering different types of seizures.
In September, she went into status – non-stop fitting.
After ten hours of constant fitting, there was nothing medics could do except placing tubes into Evelyn’s airways and putting her into a drug induced coma.
A week later, she remarkably bounced back and woke up, giving her family hope she would improve.
The youngster, who never cries despite the ongoing medical procedures, returned home for Christmas.
However the fits became relentless and she got weaker. She was re-admitted to hospital in the new year and in March she became dramatically worse and unable to breathe alone.
Evelyn spent a further eight weeks in and out of a coma.
Debbie and Elliot were told the fits had caused broad brain damage and they should prepare for the worst.
Debbie, a pragmatic woman devoid of self-pity, says: “It was a black day. I’ll never forget that moment.
“We were told there are patches of brain damage all over her brain including the stem, the part of the brain which controls breathing, heart and kidney function, so core life support functions.
“We had some very difficult conversations where we were told about palliative care. It turned from ‘this isn’t a life limiting condition’ to ‘you might have a couple of weeks.’ “However Evelyn is Evelyn. She rallies, she digs deep and here we are with her at home.”
Debbie and Elliot, who are now trained in resuscitation and administering their daughter emergency medication, are today remarkably positive and determined, like their daughter, they will not give up.
They say without the team from the G2 Neuro ward at Southampton General Hospital, they do not know where they would be.
Elliot and Evie with part of the nursing team from G2 Neuro Ward. Left to right: senior sister Mandy Frisby, Laura Gray, sister Kate Bailey, dietician Sian Phillips and Lucy Trapp, front.
“I’m stunned by the level of care. They have been amazing. They seem more like a family to us. They don’t just provide Evelyn with care and support but us too.
They go to great lengths to love and care for her rather than just medically tend to her. I can’t find the words to thank them,” says mum-of-two Debbie.
Debbie, says: “Someone once said to me ‘I don’t know how you cope? But my answer was ‘what else am I going to do?’ I love her with all my heart.
“If I start thinking about what Evelyn can’t do and the future, that’s a rabbit hole of darkness for me. I have to relish in what she can do that I was told she wouldn’t be able to do.
“I’ve always believed life is a full and rich experience and should be lived to absolute extremes all of the time but Evelyn does make me value family tremendously. There are no words.”
Elliot, says: “You go through a grieving process to come to terms with the whole thing but it is grieving for a child who is still here.
“Evelyn has started smiling, eating, moving around and recognising us and all those positive things can turn into a good week so all you can do is to cling onto the lovely bits.
“Whatever happens, Evelyn fights and so will we.”
Saints stars kick off Evelyn fundraiser
Evie's grandad Roger Sherwood, former chairman and manager of Eastleigh Football Club and grandma Jenny Sherwood
FORMER Saints stars have rallied round to show their support for little Evelyn.
The event supported by the owner of the club, Stuart Donald, will take place in September.
It is organised by Evelyn’s grandad, Roger Sherwood, who is the former chairman and manager of Eastleigh Football Club.
He said: “Evelyn is the most beautiful little girl. The way Elliot and Debbie have handled the situation has been a learning curve for all of us. I’m immensely proud of them.”
All money raised will go to The Evelyn Rose Appeal set up to fund her complex care costs.
There has already been a Greek night at Nick’s restaurant in Southampton supported by Wessex Regional Care Limited.
To support the family or for more information go to: evelynrose.org