04292017Headline:

County Durham family of youngster with rare condition focus on fundraising

Little Hollie Hunter is a girl as delicate as glass.

Her tiny bones could shatter at the slightest bump after she was stricken with a disease so rare only 50 other UK cases are known.

Now, four-year-old Hollie, from Chester-le-Street, County Durham, faces months of chemotherapy in the hope that the condition can be halted.

And her mum Kim revealed how a simple childhood accident – when Hollie broke her arm in a fall – instead emerged as something more sinister.

Kim said: “It was a typical fall, but when I thought about what happened it just didn’t add up. Hollie fell on soft grass so the impact shouldn’t have broken her arm. It wasn’t normal.”

The family’s nightmare began to unfold when consultants first feared Hollie had cancer.

Kim, a biomedical scientist at a Sunderland hospital, recalled the moment she was ushered into a room by doctors before she went into shock.

She said: “They asked me to come into this room and I kept thinking it wasn’t right.

“They thought Hollie might have cancer and over the next few days we lived at the hospital as they did loads of tests.”

What followed was an anxious wait as brave Hollie went through a series of MRI scans and biopsies only for consultants to realise she did not have cancer after all.

But Kim’s relief was short-lived when doctors broke the news that Holly was instead suffering from Langerhan’s Cell Histiocytosis, one of the rarest diseases in the country.

Specialists now believe Hollie may have been born with the condition – leaving her little body a ticking time bomb and doctors amazed an accident had not happened sooner.

Kim explained how the childhood accident had, remarkably, been a slice of good fortune.

The mum said: “Breaking her arm was a blessing in disguise.

“We would have been none the wiser and she could have done far more serious damage because her bones are being eaten away.”

Her condition means Hollie’s white blood cells are attacking her bone marrow. Doctors discovered more than 20 bone lesions throughout Hollie’s body, including the back of her skull. And Kim must constantly watch over her daughter who could suffer a break from the slightest knock.

She can no longer join in with playtime games and Hollie is highly prone to infection.

Hollie is undergoing an 18 month course of chemotherapy and has a tube fitted in her chest to administer a drug cocktail doctors have devised to fight the disease.

Constant biopsies were halted after doctors grew concerned Hollie’s bones may fracture as they tried to take tissue samples.

The close family has pulled together and Kim says her sister, Amanda, has been her rock in recent months.

Amanda, 39, who lives only a few doors away on Pelaw Road, always attends Hollie’s chemotherapy sessions. She said: “I remember Hollie had this massive toy dog called Patch, but there was no way he could fit in her hospital bed because me and her Mam were either side holding her.

“Chemo scares Hollie so much and fighting the fear is a massive thing.”

Hollie has her own unique way of getting through the sessions – with a little help from her favourite pop star Rhianna.

Amanda said: “Hollie can be a bit of a diva and she loves Rhianna, so on the way to the hospital we always sing ‘Diamonds’ and by the end Hollie is saying ‘I can do this’.”

But there is no knowing whether the chemotherapy will work and the steroids she is prescribed have changed Hollie’s personality.

Amanda said: “They give her terrible mood swings. We laugh about it and call her a little monster, but it’s been hard for her school friends who’ve had to quickly learn about her condition.”

South Pelaw Infants School has supported Hollie throughout her treatment, and her teachers have even taken special courses about infection and other risks she faces every day.

Her former school, Village Montessori Nursery in Birtley, has made a CD of Christmas songs to raise money for The Histiocytosis Research Trust.

One of Kim’s work colleagues is completing the gruelling Bob Graham marathon – a 66 mile challenge in the Pennines – for the same cause. And Amanda, a mental health nurse, has also thrown all her efforts into fundraising. She said: “It’s just my way of getting through things. Kim was, and still is, in a state of shock but she raised over £3,000 when she skydived in September.”

A campaign called Help for Hollie was set up on Facebook and Amanda hopes the community’s efforts will help spread the word about the little-known disease.

She said: “There is no support group in the region and nobody knows what this disease is. Even Hollie’s consultants are stabbing in the dark, and her samples are actually being used in research at the moment.”

Hollie is due to start her next round of chemotherapy this month. Her family is praying the treatment will work.

But for now they are trying to make sure she lives as normal a life as possible. And, while Kim dare not look too far ahead, she has one special surprise in mind for her little girl.

“I don’t care where, just as long as we can leave this all behind and be together.”

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