Winnie Heath has had to endure so much, from the moment she was born by emergency c-section in December 2014.
She had to be resuscitated at birth and then multiple times in her first 24 hours.
The doctors quickly discovered she had cysts on her brain and she went into heart failure. She wasn’t expected to survive.
At just a few weeks old, Winnie was transferred from the neonatal intensive care unit to Great Ormond Street Hospital.
She had open heart surgery and, amazingly, it was a success, although she stayed in hospital for the first three and a half months of her life.
“The day we were able to take her home, we felt overwhelmingly proud and thankful,” said mum Fiona Eldridge, from Saffron Walden.
“She’d overcome so much, with the help of so many people.
“However, we knew it was likely she’d have further difficulties.
“We soon discovered she wasn’t moving as expected and didn’t learn to talk.
“She also developed epilepsy and required many more operations, including further open heart surgery.
“During a routine eye operation, we also learnt Winnie’s eyes had not formed correctly and she was diagnosed with retinal dysplasia – a condition that has left her completely blind.
“We only found out last year that Winnie has a rare genetic condition. She’s one of only 15 children in the world known to have this variation of the CDK8 gene.”
Despite being sociable and intelligent, Winnie is unable to walk or talk.
She and her family have been receiving care and support from East Anglia’s Children’s Hospices (EACH) since early 2015 and are regulars at the organisation’s Milton hospice.
“EACH has been a big part of our lives, right from the beginning,” said Fiona.
“My initial response was probably pretty normal. I didn’t want to know and thought ‘why would we need a hospice?’
“However, my opinion very quickly changed and one of the things I appreciated most in the early days was the fact people were on hand to entertain Molly.
“She was very young at that stage and it gave me a chance to take a break and catch my breath.
“We were still adapting to our new life.
“James and I are both very social people. We love being around people, in noisy environments and doing daredevil things.
“Suddenly we were in a position where we had a baby daughter who hated any kind of noise. The slightest thing would make her scream.
“It was so hard and a very difficult time, but we got so much help and support from the team at EACH.
“As I say, I loved the fact they helped entertain Molly. From my perspective, that feeling of intense guilt was overwhelming.
“I felt I was ruining her life and that she was missing out, because we weren’t able to do everyday things like other families.
“I want to be out and about, too – that’s the kind of person I am – so I look back on that as a very hard period.”
Winnie, her parents and sisters have always attended family days and memory-making sessions at Milton.
Molly and Wanda enjoy sibling groups and the family have always been regulars at Milton Christmas parties.
“I love meeting other families,” said Fiona.
“It makes me realise we aren’t alone and that there are others in a similar position.
“Despite her challenges, Winnie is a true fighter and has made amazing progress. No-one thought she’d live this long, so she’s already defied all odds.
“She thrives on one-to-one support, as well as the usual love and cuddles from ourselves and her sisters, and she’s very bright.
“We’re so proud of her and she’s an amazing little girl, despite having so much to contend with.”