Candis Big Give – my AFK
Rachael Hibbert from Luton explains how my AFK helped her daughter, Chloe, 8, with her mobility
Being told you can’t hold your newborn baby, or that you can’t even pick her up when she cries, is heartbreaking. But this is what Rachael Hibbert and her partner, Ryan Gifoli, were faced with when their two-month- old daughter, Chloe, was diagnosed with osteogenesis imperfecta – brittle bone disease. With multiple fractures to her arms and spine, Chloe had to lie on a tea tray – a makeshift bed the nurses made so that she could be carried around and so that Rachael could still breastfeed.
“We couldn’t even change Chloe’s nappy unless it was absolutely necessary,” Rachael recalls. “It was heartbreaking.”
Apart from the fact that Chloe had been born at 35 weeks and had jaundice for a while – which is not that unusual in premature babies – she seemed healthy and the couple had no causes for alarm. But then at two months, in February 2011, Rachael noticed that Chloe wasn’t moving her left arm properly.
“She was lying in Ryan’s lap when suddenly we heard a loud ‘crack’ and Chloe began to scream,” says Rachael. “We took her straight to Luton and Dunstable Hospital, where she was X-rayed and given an MRI scan. It was dreadful when we were told about the fractures; we had no idea what had caused them. Her tiny arm was put into a splint and we stayed in hospital for a week afterwards.”
The results of an MRI scan were sent to Great Ormond Street Hospital (GOSH) and the couple were told Chloe had brittle bone disease.
“They weren’t sure if she had been born with the fractures or if they had occurred while she was being breastfed,” says Rachael. “Chloe’s bone density was picked up on the X-ray too, some of her bones are almost translucent. The whites of her eyes have
a blue tinge to them, called blue sclera, and she has an extra bone in her skull, all of which are symptoms of the condition.”
From nine months old, Chloe was given a bisphosphonate infusion intravenously every six weeks over a three-day period, to help the bone to form more solidly, though it can’t prevent the fractures.
In the years that followed, she endured numerous fractures – particularly to her left arm, which is weak and bowed but unable to be corrected by surgery as it is too thin.
Despite her condition, just after her second birthday, Chloe began to stand and learnt to walk.
“Although we were
so pleased with her,
we were also
recalls Rachael. “She was too young to understand she would run and fall and it was usually her left arm that would get hurt.”
To help reduce injuries she was likely to pick up from being active, Chloe began using a wheelchair at three and a half. She also started nursery then, followed by school at four, where she received one-to-one support.
“She’s always loved school and relished any opportunity to be independent,” says Rachael. “However, the NHS wheelchair she had was too heavy for her to manoeuvre herself, which meant that she always had to have someone push her around.”
Chloe’s occupational therapist at GOSH suggested the family contact the Brittle Bone Society to request a lighter one. Following their application, they were subsequently put in touch with my AFK – a charity which helps disabled children and young people to live independent and fulfilling lives.
“Chloe had raised £500 towards the cost of a new chair by lying in a paddling pool
of jelly for sponsorship from friends and family,” explains Rachael. “They told us that a family who wanted to donate a sum of money to help a child with their mobility had heard about Chloe and offered over £1,000 to add to the £500 to buy a self-propelled chair.
“We received the chair on 10 December last year and the next day was her school Christmas disco. She was over the moon to be on the dance floor with her friends, without anyone needing to push her around. It was very emotional to watch.
“The chair has made such a difference to her life. She uses it every day and it’s so much easier for us to get it in and out of the car. Providing she doesn’t have a fracture, Chloe can walk for short periods of time around the house and she can get out of the chair to sit at her desk at school. Her teachers at Hillborough Junior School in Luton saw a difference in her straight away – she’s now happier, more independent and thriving.”
Chloe is currently on another bone-strengthening drug called zoledronate, which she takes intravenously one day every six months. She has also since been diagnosed with dentinogenesis imperfecta, which is a tooth development disorder that is associated with brittle bone disease, which means her teeth are translucent and don’t grow properly, so she has to visit a specialist dental clinic in London every six months for check-ups.
“Ryan and I take every day as it comes,” says Rachael. “If Chloe has a fracture, we deal with it and carry on. We can’t watch her every minute, she does get knocked and she often falls, but we remind ourselves she will be mended and we start again. In every other sense our beautiful, brave daughter is a normal eight-year-old. She just gets on with things, loves to play with her collection of Hatchimals and Shopkins toys and sing and dance to Little Mix. We love her so much, as does her younger brother, Jack, 5, – most of the time!”
Providing mobility equipment for disabled children and young people
TOTAL RAISED: £13,416
➸ Funds raised in The Candis Big Give will be used to help the charity to provide one disabled child or young person every week in 2019 with the mobility equipment they need to gain maximum independence and make the most of their lives.
DONATIONS TO DATE
We never forget it’s YOUR subscriptions that enable Candis Club to give huge amounts to charities. Our running total shows how much
to the Cancer and Polio Research Fund (1962 to 2002)
to the National Asthma Campaign (1990 to 2002)
to Marie Curie (1998 to 2012)
to Macmillan Cancer Support (1993 to 2013)
to Bliss, the special care baby charity (1990 to 2009)
to Liverpool University’s Cancer Tissue Bank Research Centre (1989 to 1993)
to the British Heart Foundation (2002 to 2008)
to local groups via the Charities Aid Foundation (CAF) (1990 to 2009)
to ICAN (1989)
to Tommy’s, the baby charity (2006 to 2009)
to Children’s Hospices UK (2008 to 2010)
to charities in The Candis Big Give
TOTAL TO DATE
Make a difference
We’ve highlighted some of the charities taking part in The Candis Big Give. For a full list, and details of the life-changing projects they’re raising money for, visit candis.co.uk/charity
CANCER RESEARCH UK
What it does: Funds vital research into cancer and its treatment.
Candis Big Give project: To find new ways of tackling cancer through the charity’s Pioneer Award.
Total raised: £110, 998
What it does: Partners people with disabilities with assistance dogs.
Candis Big Give project: To increase the number of dogs and raise money for the breeding programme, training and kennels.
Fundraising target: £90,000
CHAILEY HERITAGE FOUNDATION
What it does: Helps children with complex physical disabilities.
Candis Big Give project:
To offer access to Eyegaze technology and buy 20 devices to allow children to use computers and interact with the world around them.
Total raised: £18,150
What it does: Supports those affected by childhood cancer.
Candis Big Give project: To develop the charity’s ROCK project.
Location: South-east England
Fundraising target: £8,000
What it does: Raises funds for 30,000 patients each year at The Clatterbridge Cancer Centre.
Candis Big Give project: Money raised will go towards a bone marrow transplant suite at its new cancer hospital in Liverpool.
Location: North-west England
Fundraising target: £66,990
THE LULLABY TRUST
What it does: Offers specialist support to bereaved parents
when a baby dies unexpectedly.
Candis Big Give project: To help the charity to support families with a range of services.
Fundraising target: £65,000
How buying a subscription helps
In 2019, Candis Club will donate at least £250,000 from members’ magazine subscription revenue to health charities taking part in The Candis Big Give. Any additional funds will go to charities at the discretion of the General Committee of Candis Club.