Norwich girl with rare condition returns buoyed after dream holiday in Florida

Ella Kett, who is fighting a debilitating condition, has enjoyed a dream holiday to Florida with her family. Photo: Supplied Ella Kett, who is fighting a debilitating condition, has enjoyed a dream holiday to Florida with her family. Photo: Supplied

Monday, December 30, 2013
6:55 AM

A Norwich girl who is fighting a very rare genetic condition has returned buoyed after a dream holiday to Florida

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Ella Kett, 10, from Capps Road, near Sewell Park, enjoyed the once-in-a-lifetime trip thanks to Caudwell Children, the national charity that provides practical and emotional support to disabled children and their families.

Ella, who has Cornelia de Lange Syndrome, was accompanied on the trip by her mum, Faye, 37, and her brother, Matthew, 19, who is at university in Liverpool.

They travelled with another 25 families and Mrs Kett, who is a family support worker in Norwich, said: “We had a fantastic trip to Florida. Ella does not really say much about her feelings but if you ask her what was her favourite part of the trip she will say feeding the dolphins and going swimming.

“She also said she made two new friends called Grace.

“The best thing about the trip was that we forgot about doctor’s appointments, hospital visits, and therapy sessions.

“If it had not been for the daily medications and the wheelchairs you would never have known there were any issues with the children on the trip; the smiles and laughter were simply beautiful.

“It was a great experience for us all and helped us bond as a family.

“I was left on my own with the children when Ella was just eight-weeks-old and Matthew, 10, so there was lots of struggles especially when Ella would spend long periods in hospital and especially when she didn’t sleep properly.

“For several years I felt I could not be a very good mother as I was always so tired, worried and bogged down with paper work, appointments and endless therapies.”

Ella attends the Parkside School for children with learning difficulties and complex needs, in College Road, Norwich, and is one of an estimated 300 people with CdLS in the country.

People with CdLS have multiple disabilities, including learning difficulties.

Ella was clinically diagnosed by doctors when she was five, but it was not until October 2011 that it was officially confirmed, after her DNA was sent to the US where they were testing a new gene found in CdLS called HDAC8. Only 35 people in the world have this gene abnormality.

During her daughter’s worst days, Mrs Ketts said she had started planning her daughter’s funeral while waiting at the hospital.

She added: “Ella’s development has been affected, especially her learning and her speech and her gross motor skills and she finds it difficult to walk too far.

“She is at a complex needs school which has helped her immensely. Ella has problems in social situations and suffers with anxiety.

“She was diagnosed with kidney problems in 2012 and has severe reflux which is controlled with daily medication. She has undiagnosed bowel issues too.”

As part of the trip, the family visited the ‘Give Kids the World Village’. which was specially built for children with life-threatening illnesses.

Mrs Kett added: “We visited Disney’s Animal Kingdom, Magic Kingdom and Universal Studios, Universal Island of Adventure and Sea World.

“Ella loved meeting the characters, especially Shrek, her favourite; she loved watching the shows too. “She loved feeding and stroking the dolphins in Sea World and also seeing the penguins and polar bears

“She enjoyed the beauty parlour, ice cream parlour and the swimming pool on site.

“She also got to do her favourite activity which is horse riding which she hasn’t done since July - we are on the waiting list for Riding for the Disabled to get her back into this.

“We don’t know what the future holds for Ella but we certainly know whatever happens we have some fantastic memories thanks to Caudwell Children. I will continue fundraising for them in the future.”

visit her just giving page at http://www.justgiving.com/Faye-Kett1

Caudwell Children is urgently appealing for donations to allow them to take more young children on the Destination Dreams respite holiday in 2014. For further information and to donate visit: www.caudwellchildren.com

Does your child suffer from a very rare condition? Call reporter David Bale on 01603 772427 or email david.bale2@archant.co.uk

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