LITTLE Chloe Alliker can’t eat solid food, is in pain 24/7 and her joints can dislocate at any minute.

But, despite her debilitating genetic condition, ten-year-old Chloe hardly ever stops smiling.

“Sometimes I start complaining that I’m tired, then I see her and realise I have nothing to moan about,” says mum, Gemma, 29.

“She’s like any child, wants to be doing things and has learned to deal with the pain and get on with it.

“You might look at her and not realise what she’s dealing with under her clothes, that she needs tubes to her heart and small intestine, or that her condition affects her daily.”

Chloe, who lives with her mum and seven-year-old sister, Ellie, in Notley Road, Braintree, suffers from hypermobility Ehlers-Danlos syndrome (EDS), (also known as EDS type three).

It affects one in 15,000 people with symptoms including unstable joints and excessive joint movement leading to dislocations, pain, easy bruising and issues in her gut.

She has been diagnosed for half of her life but her condition has escalated dramatically in the past year to the point she can no longer attend her place at John Ray school.

It makes for a lot of work for Gemma, who is also raising Chloe’s seven-year-old sister, Ellie.

“We have just returned from a 14 week stay at the Royal London hospital where we are being looked after by the very best gastro paediatricians,” Gemma adds.

“I am also doing a course just to learn how to look after her properly. I am her full time carer as well as her mum. 

“Chloe now gets all her food from an intravenous line into her heart and is plugged in for 12 hours every night while she sleeps with another tube to her small bowel.

“It’s impossible to explain how this affects not only Chloe but everyone in the family.”

Chloe would have inherited the genetic condition from her mum or dad, who now lives in London, but no one else in the family is afflicted and Ellie is showing no signs either.

A nasty symptom is an attack on her soft tissue which can cause her joints to come out of place at the smallest movement. This week her knee has dislocated.

For Gemma, finding moments of normality and family pleasures are as important as all the hospital visits and medication.

“My favourite time is when I pick the girls up and we’re sat in my car singing along,” she says.

“They are massive on Frozen and Ollie Murs. They are the moments I really love among the daily struggles, the small things make all the difference.”

Her aim is to get Chloe back into school.

“I have had to re-think what ‘normal’ is in the past year,” she says.

“I feel like Ellie has basically been abandoned but we have good support around us.

“We’ve met a lot of families with type three children and everyone is different. Chloe is quite bad but there are people dealing with the real extremes.”

Chloe’s worsening condition has meant she needs a wheel chair to get around and until recently the family have loaned one from the Red Cross.

Through their nurses, Gemma heard about Essex based charity, Wipe Away Those Tears, which offers funding for equipment and experiences for children with life limiting conditions and contacted them.

“I sent an email on Monday and heard back straight away confirming they can fund a new wheel chair for Chloe,” Gemma says.

“It’s amazing to get such a quick reply and it will make our life so much easier. Borrowing a wheel chair has been okay but it’s not ideal.

“Wipe Away Those Tears is doing great work and we really appreciate it.”

 

THE CHARITY

WIPE Away Those Tears, an Essex based charity, was set up in January 2007, by a couple who realised they were luckier than most.

“We had four healthy children and really started thinking ‘how can we help families that don’t have it so good?’” says founder Gail O’Shea.

She and husband Jason asked for donations rather than floral tributes when his father Phil died. The money formed the basis of the charity.

They went on to hold a grand ball event at their Brentwood home and raised thousands for a trust fund and began inviting families with children suffering life limiting or life threatening conditions to contact them. The movement has grown year on year.

“Every single penny we make goes back into the charity,” Gail says.

“My husband adds extra funding through his business, Furniture Office Solutions, some ladies who work with him help with the admin and we have three trustees who agree where the money goes.

“We need to find more people in Essex to help!”

The key to its popularity is the easy system Gail has set up for people to request funds.

You simply email her with an outline of your child’s condition and contact details.

“We never give out money but we spend it on things they need or experiences, which are just as important for these children,” Gail adds.

“I actually had to stop visiting the families because I was getting too involved and too upset by their stories, so now I just deal with it on email.

“But I usually make a decision within 48 hours and we cover the whole of Essex.”

They have sent children on holidays of a lifetime as well as funding equipment such as home adaptations and wheelchairs.

The annual ball has become a popular fixture at their house and continues to be the main source of funding, although many families have also taken up their cause and are raising money for the charity.

To get in touch with Wipe Away Those Tears email gail@wipeawaythosetears.org, add them on twitter @wipeawaythosete *CRRT* or search them on Facebook.

www.wipeawaythosetears.org