Three-year-old Ellie Sykes is allergic to sunlight and exposure causes agonising skin rashes

But three-year-old Ellie Sykes is unlike most children her age.

She doesn’t get to spend hours playing outside in the garden, picnicking in the park or whiling away long summer days on the beach – because Ellie is allergic to sunlight.

That means exposure to the sun and UV light causes her agonising pain, which makes her face swell up and brings her out in itchy, sore hives.

“Ellie has suffered with severe skin problems since she was born,” says mum, Kate, 32.

“She was diagnosed with eczema and although she is only three, life has been a long cycle of medications, sleepless nights, infections, investigations, painful skin and a lot of isolation.

“It was horrible seeing my little girl in a lot of pain. It affected the whole family and we all felt pretty helpless with what to do.

“One day she woke up absolutely covered in blood. I picked her up, drove to the doctors and demanded to see a GP to get a referral.

"The receptionist was horrified. She booked Ellie an appointment that day and our GP made an urgent referral to the allergy clinic at Southampton General Hospital.”

In fact, Ellie, who has four sisters, spent most of last year on Ciclosporin, an immunosuppressent drug, to try to get her eczema under control, but Kate explains that as her chronic eczema became more manageable, it became clear that she was reacting to something.

"Allergy testing gave the family some answers, but despite huge doses of antihistamines and daily medication, it was still happening and the family’s concerns were about to get worse before they would get better.

“We were in Newcastle visiting family at Christmas and I had to take Ellie to the hospital as she had developed a skin infection.

"The day before this, Ellie had been to our own GP and hospital down here for blood tests to investigate bruising on her body.

"At the out of hours doctors, they questioned the bruising and acknowledged we were away from home and on this basis, they made a decision to contact social services.

"We weren’t allowed to leave the hospital until social services and a paediatrician had assessed her, despite me having all of her medical notes and a copy of the blood form from the day before. I was horrified.

“I would never in a million years hurt my daughter. I was on my own with her and so scared. I was told if I took her from the hospital I would be arrested.

"Though this seemed to be the worst thing in the world at the time, it did turn out to be okay.

"Ellie was examined and I was questioned, and it was agreed she was not at risk, however it was still necessary for a social worker from Hampshire to visit us at home, and it was at this appointment that is was identified that Ellie had unique additional needs.

“I actually cried when they visited me at home, as it was as if someone had plucked all of my worries and concerns out of my head and addressed them.”

From this point onwards Kate says the support and help they have received from social services has been superb, but the cause of Ellie’s reactions was still unclear until, one day, Kate had a light bulb moment and began to connect all the dots.

“The reactions were happening in places with strip lights and when we were venturing out into the sunshine,” she explains.

“I did some experiments and a number of appointments followed and we now are now at a stage where it is suspected suspect it as being solar urticaria or photo sensitive eczema.”

Kate and her husband, Daniel, are hoping for a more conclusive diagnosis over the next few months.

But what this means for Ellie is that if she is exposed to UV rays from sunlight, fluorescent lights and low energy bulbs she will suffer from hives, a wide spread rash, pain, swelling, irritation, fatigue, nausea and headaches.

These reactions can last for hours or days and in Ellie’s words it ‘feels like she has hot little bugs crawling all over her’.

“As you can imagine, we do everything we can to limit the exposure. She is fully covered and wears a hat and suncream whatever the weather.

"She can’t sit in certain areas of the house as UV creeps in through the windows and conservatory.

"She hasn’t been able to attend a regular nursery, play out during the day or play with friends. Everything has to be planned and every action has a consequence.

“And trips out can’t always be avoided – we spend a lot of time visiting hospital, applying lotions and potions and monitoring her so she doesn’t injure herself.

"Ellie is very aware and sometimes tries to hide from lights in racks of clothes or under chairs.”

Ellie is a very outgoing little girl who loves drama and putting on plays with her sisters, and despite the difficulties they face daily, Kate is determined to make sure that her daughter’s condition does not hold her back.

The family is fundraising in the hope they can raise enough money to buy UV filter tints for all the windows at home, special ‘skinny’ suits to protect her and a mattress to keep her cool so that she is more comfortable during a flare-up.

“For all she goes through, I’m on a mission to make life easier,” says Kate. “Ellie is an amazing girl who has been through such a lot in her short life. Life has been quite restrictive for Ellie in many different ways.

"We are determined to make a difference to her quality of life and to give her the same opportunities as her siblings, who are wonderful with her." and very protective and supportive.

“Life is very unpredictable and we are lucky to have a very understanding friend and family network who know that plans can change depending on how she is.

"Ellie continues to amaze me with her strength and resilience and understanding of her condition at such a young age - she’s my little firecracker.”

Follow Ellie’s journey or to donate to her fund please visit  gofundme.com or facebook.com/alifeinthedayofelliemay.