A little girl is one in 25 million after being diagnosed at birth with a disease that affects only 300 people in the WORLD.
Tough toddler Daisy Berry has incredibly rare Pallister-Killian syndrome (PKS), which means she has two extra parts to one of her chromosomes.
The youngster has already had TEN operations in her short life.
The condition has left the 18-month-old with a larger forehead, learning difficulties, deafness and an upturned nose, but parents Jenny and Steven said they “just look at Daisy as Daisy”.
Jenny, 31, thinks Daisy may be the youngest tot to be diagnosed with the condition, as it is usually spotted in children who struggle with development or have other difficulties.
Childcare staff trainer Jenny from Standish, Gtr Manchester, said: “We believe she’s the youngest. Usually children aren’t diagnosed until doctors later pick up on another issue.
“Because of our reaction to the way she looked when she was born they spotted the abnormalities and started the procedures straight away.”
Jenny, who also has daughters Lucy, 10, and four-year-old Lily, said Daisy’s resilience is “incredible” and “unlike any other baby’s”.
“I work with children and I’ve never seen anything like it. She is literally incredible. The day after she had a colostomy she was sat on my knee smiling. The surgeon was totally shocked.
“She has proved all the doctors wrong. Even though children with PKS develop much slower, Daisy is already sitting and standing up on her own.”
“She’s a tough little cookie.”
Jenny first noticed something was wrong during pregnancy, when her bump grew much larger than for her first two daughters.
“I had an inkling something wasn’t right because I hadn’t been that big before”, she said.
Since then Daisy has had four major operations removing an ovarian cyst and having to move her bottom to the right place. She has also undergone six minor operations but still finds time to smile for her proud parents.
Jenny said Daisy’s care free attitude makes it easier for her and husband Steven, 40, who works for British Gas.
She added: “My other two daughters have been fantastic. Lucy knows the ins and outs about the syndrome.
“I think they’ve a lot more time and patience for her than they do for each other!
“Lily is inseparable from Daisy. They go to the same nursery and she always pops upstairs to make sure staff are looking after her and to give her a cuddle. Both of them are like two extra mums to Daisy.”
Life expectancy in children with PKS can vary, although Daisy’s parents say they refrain from reading information on the internet.
“We just take things day by day and enjoy every moment with her. Reading stuff on the internet can be a bit scary. Although it’s always in the back of our minds we try to avoid doing it”, said Jenny.
Daisy’s family have since been raising thousands for the Royal Manchester Children’s Hospital Charity.
To support the family’s fund-raising appeal, go to www.justgiving.com/great-northern-roadtrip or text DVEE88 and the amount you wish to donate to 70070.
