Daily Mirror (Northern Ireland)
Eve waited 15 months to smile, now she can’t stop
AS Jenni Williams watched her daughter Eve’s peaceful face while she slept, two painful questions crept into her mind. Is she happy? And will she ever know who I am?
Because Eve was born with a rare genetic disease known as chromosome deletion. A section of her DNA was missing, leaving her severely disabled, unable to open her eyes and suffering from infant epilepsy.
The drugs to stop Eve’s potentially fatal seizures also left her too drowsy to interact with her parents. She couldn’t even smile until she was 15 months old.
“That first year was just a rollercoaster of hell, really,” says Jenni, 42. “We loved Eve but we felt none of the joy of being new parents, only fear as we wondered what would happen next.
“I remember saying to my husband, I would find this so much easier if I knew she was happy.
SMILES
“A week later she was in the bath and she started smiling. She hasn’t really stopped since. That was the point when she really became Eve. She is an absolute joy to be around.”
Eve’s condition is called a 3p25 deletion. There have been just 50 recorded cases in the world. It means Eve is small – she weighed just 3lb 8oz at birth and grows more slowly than most children.
She has ptosis, or drooping eyelids, and could not open her eyes until she was five weeks old.
Even then she could only open them intermittently until she had corrective surgery a year later.
Jenni, from Dorking, Surrey, says: “Not being able to see her eyes made it more difficult, because they say eyes are the window to the soul.
“I would look at her and wonder, is there a little soul in there?”
Thankfully, Eve’s medication cured her infant seizure syndrome, leaving her with less dangerous seizures. But she also has severe developmental disabilities.
Eve, now five, cannot talk and only started crawling last year. She has graduated to cruising around the furniture, but cannot walk more than a few steps on her own.
Yet she has so much energy and enthusiasm her parents have nicknamed her ‘the Tiny Tornado’.
“We’ve stopped worrying about those milestones and what anyone else is doing,” says Jenni. “We just enjoy what Eve does, when she does it. She’s perfect, she’s such a happy soul. Her condition is only a small part of her, it doesn’t define who she is and it shouldn’t define our life.”
Eve loves watching old episodes of the children’s show Fraggle Rock and enjoys swimming. She has also formed a close bond with the family’s golden retriever, Scout. Jenni says: “When we go walking in the woods Scout disappears off. Eve always gets excited when I call Scout back because she loves it when he comes bounding out of the trees towards her.”
However, there are few mass participation events that cater for people with disabilities like Eve. That is something former Paralympian Sophia Warner hopes to change.
This Saturday she launches the Superhero Tri at Dorney Lake in Windsor. In theory the triathlon will see participants cycle, swim and run around the lake.
However, the event will ditch all the rules and regulations to ensure everyone can take part, no matter what their disability – including motorised wheelchairs and participants being pulled through the water with boats.
Eve has been chosen as an ambassador for the Superhero Tri and will be tackling the course herself, ably assisted by her two sidekicks. Dad Steve, 42, will complete the cycle ride, and Jenni will do the swim before helping Eve through the run, pushing her for the first 900 metres then holding her hand as she walks the last 100.
Jenni says: “We did our first run last year and Eve walked every step of the last 100 metres. When she got tired I picked her up and stood still until she was ready to go again.
“It took us eight minutes and six seconds and she managed the last two steps across the finish line all by herself. I think that is far more impressive than what Justin Gatlin managed to achieve the other night.
“This time we hope to go quicker and Eve is going to try to walk five steps across the line before she collapses into my arms.
“It’s incredible to think that she’s going to be an ambassador for a major sporting event and she is only five years old. It’s fab.”
Sophia, 43, could never have dreamed of doing that when she was Eve’s age. Growing up with cerebral palsy in the 1970s, she found that disability was a greater barrier than it is today.
INCREDIBLE
But she took part in whatever sport she could, following in the footsteps of her big brother, who was a keen cross country runner. She was spotted taking part in a 10km run and convinced to start racing competitively for a disabled team, specialising in the T35 category 100 metre sprint.
“Paralympians now don’t know they are born,” says Sophia. “When I first started competing it was just my dad and his dog that came to watch me.
“I stood on an upturned crate to collect my first gold medal at the World Championships in 1998.
“When I turned up at the Paralympics in 2012, it was obvious something had changed. Instead of 80 people there to see us, there were 80,000. It was absolutely incredible.”
But Sophia – who juggled sprinting with her career as British Athletics’ commercial director, running a small farm and raising two children – insists her new event is not just for Paralympic superheroes.
She says: “Not everyone can be an Olympian, but they can still enjoy running and taking part.
“I’ve always been quite frustrated by the lack of things that I can do for fun now I’m retired.
“Rather than complain about it, I decided it was time we started our own event. Not everyone who is disabled is going to be a Paralympian, but they should be able to enjoy sport too.”