'She died in my arms with her daddy holding her hand' Parents Mike and Suzanne Parmenter campaign to fight devastating rare disease

And when he is photographed holding the precious item he will know his little daughter Isobel is with him.

In fact the little girl is always with her parents Mike and Suzanne who have kept her memory and spirit alive by fundraising in her honour following her devastating death aged just 22 months from a rare form of cancer.

Suzanne says: “She was my mini-me. She was born at exactly the same time of day as me, within a few days of my birthday, and we weighed exactly the same.

“Izzy looked like me and we were very, very close. She was our world and I will never stop loving her or missing her.

“But we knew fairly soon after she died we wanted something good to come out of this and if we could just save one other child by raising awareness then it would have been worth it,” says Suzanne.

The family, who live just outside Colchester, had only recently celebrated Isobel’s first birthday when she began to show signs of being unwell.

“She had a heavy cold which I did not think much of and then she started to go off her favourite foods and was often sick.

“Her nappies were often really foul-smelling and I just had a real mother’s intuition that something was seriously wrong.

“She had been a very lively, happy, little girl. She really did light up a room but she lost her sparkle almost overnight.”

Despite numerous trips to the GP a diagnosis was not forthcoming and it was initially thought Isobel may have dairy intolerances.

By now it was early 2014 and Isobel had became so unwell Suzanne and Mike took her to A&E and insisted she be admitted.

“I told them we were not leaving until she had been admitted because I just knew something was really wrong and then she was transferred to Addenbrookes and they carried out endoscopies and colonoscopies to try and find out what was wrong,” she says.

Over the next five and a half months the little girl underwent a host of biopsies, scans, ultra sounds, MRI scans and blood and platelet transfusions before, nine months after first becoming unwell, she was diagnosed with Langerhans Cell Histiocytosis.

The disease affected almost all of her internal organs.

“Through all of the tests she was so brave.

“She didn’t really cry or complain and some of those tests and scans can be very painful.

“All she had was her favourite blanket, which she called Sniffy, and us holding her hand.

“The nursing and medical staff could not believe it as they had never seen a child who was so brave, even at just 18 months old, but it must have been the bond was so strong between us that if I was telling her it was alright then she believed it was,” explains Suzanne.

Isobel eventually had to be fed through a tube and her mouth and throat became so sore speaking was almost impossible.

Despite using two different types of chemotherapy Isobel did not improve and the UK’s leading expert in the disease was consulted and suggested trying salvage chemotherapy.

“It is extremely potent but because of how Isobel had coped with her treatment up until then they thought she would be a good case despite there being a risk she might not make it.

“But we never ever thought she would die and so it was a massive shock when she got an infection and then it became clear she would not recover.

“We wanted to give her the dignity she deserved and to be with her so we made the decision to take her off the ventilator she had been put on,” says Suzanne.

“She died in my arms with her daddy holding her hand.

“Throughout her entire illness we had never left our child on her own even for a minute. One of us or her grandparents had always been with her and that was how we wanted it at the very end.”

Suzanne says they were in shock but knew from the minute they lost their daughter they wanted to make sure they kept her memory alive.

“I am not one of those people who would lie in bed and pull the duvet over me and wallow and Mike said Isobel would be cross if we did not live our lives for her.

“So we began raising funds and also awareness for histiocytosis because so little seemed to have been known about it.”

They began their fundraising in 2015 with a cake sale for the charity HistioUK and then in December of that year set up Isobel’s Memorial Fund as part of the Children’s Cancer and Leukaemia Group and funds quickly rose to around £15,000.

They also approached Colchester Zoo, one of the few places their daughter was able to go to and enjoy family days out, about a memorial for Izzy.

“We asked for donations in her memory at her funeral and as the elephants were her favourite animal, she called them Huftys, we simply wanted to buy a bench.

“But the donations were so generous they amounted to more than a few thousand so we approached the zoo about sponsoring the elephant house.

“As that was already sponsored by someone else they began to talk to us about the butterfly exhibit they were building and that immediately seemed perfect to me because butterflies are something you often associate with little girls and also, if you believe in that sort of thing, the spirit world.

“So we agreed to sponsor that and then it became a place other parents who had lost children could also put a plaque in memory of them.

“I find it hugely comforting that there is a place others can go and also for others to know they are not alone.

“It is a club no parent wants to belong to, the one where they have lost of a child, but knowing there are others going through a similar loss can really help,” says Suzanne, adding there is also a memorial bench at the elephant enclosure as originally planned.

They also wanted to raise as much awareness as possible about histiocytosis, of which very little had been known.

“We have actually since had to go back to Colchester Hospital where they treated her and the nurses remembered Izzie and her illness.

“And having recalled what her symptoms were they had been able to spot it much earlier in at least one child since then. Because it rang a bell from when Izzy had been there.

“And that was so comforting to hear,” says Suzanne.

Nine months ago the couple welcomed Izzy’s brother, Oliver, into the family.

Suzanne says he looks very much like his older sister and they already tell him about her every day.

She admits it will be wonderful but “very hard” as Oliver begins to hit the milestones Izzy never will.

“When someone asks me how many children I have, I always say two, but one of them has wings.

“I feel like she is there every day.

“We moved into our house just before she died but she came here and slept in her bedroom for two weeks and we promised we would finish it for her.

“While she was home she went with us to choose the paint, Peppa Pig pink, and then Mike finished it for her and we find it really comforting to go in there and sit with her things.”

Their fundraising is showing no signs of slowing down, not least with Mike’s ten-day trip to Africa to climb Mount Kilimanjaro.

He has financed the entire trip himself so all of the sponsorship he receives will go to the Isobel Parmenter Memorial Fund.

“He is training twice a day, before and after work, and then running up to 20 miles at the weekend.”

They are hugely keen to boost the fund as much as possible.

“The pain of losing Izzy will never go away, we will never get over it but this makes us feel something good is coming out of it at least,” she adds.

•  If you would like to sponsor Mike on his climb, which will take place in September, click here.
• You can also find out more by visiting Isobel’s webpage at the Children’s Cancer and Leukaemia Group here.