Belfast Telegraph

Girl who lost cancer battle leaves £16,000 funds legacy to help others with disease

By Claire Williamson

It's a lasting legacy for a brave little girl who will never be forgotten.

Nadezda Laporionok was born with a cleft palate and a range of other health issues.

But she was responding well to treatment - so much so that the youngster was set to start playgroup.

However, shortly before she was due to go, her family noticed that the pupil of one of her eyes was bigger than the other.

They say they took her to the doctors but that medics told them they didn't know what was causing it at that stage.

Tragically, Nadezda was diagnosed with rhabdomyosarcoma, an aggressive cancer, at the beginning of October 2016. Just five months later in March 2017, aged two and a half, she passed away.

Now her family have donated money that had been raised for her treatment to a children's cancer charity - helping others and creating a wonderful legacy for Nadezda.

Parents Aleksandr and Olesia (both 35), originally from Lithuania, have lived in Kesh, Co Fermanagh, for many years and have another daughter, six-year-old Leila.

Aleksandr said little Nadezda was incredibly brave.

"She was independent and mature for her age," he said.

"She was very clever and it felt like she understood everything that was happening and accepted everything that was happening. And she was so brave.

"During her life she was a happy child and very curious child."

Aleksandr recalled the lead-up to his daughter's diagnosis.

"When we booked the playgroup place - about a month before that we noticed that one of her pupils was larger than the other one.

"We were going to the doctors, but the doctors said 'we don't know what it is, we'll wait, we'll wait'. So if action had been taken two or three months before that, we probably could have saved her."

The family had never faced a cancer battle before and were searching for any option to try and help save their little girl.

They began to look in other countries for treatment options and found a clinic in Israel that offered surgery.

But as they began fundraising to try to cover the costs - and as Nadezda's condition worsened - the costs kept rising.

Aleksandr said: "It was unbelievable. The price was growing not monthly but every week." Tragically, their daughter lost her battle with cancer. However, the couple decided to direct the funds raised for her to other children in need.

Aleksandr said: "When we started fundraising we said the money is only for Nadezda and if we can't use it for her treatment, all the rest of the money will go to other kids.

"When Nadezda passed away we started to give money to the other families who we met in the hospital with similar problems."

A couple of weeks ago the family decided to donate the rest of the money to the Children's Cancer Unit Charity to create a lasting legacy for Nadezda.

Overall they had raised almost £30,000 and more than half was donated to the charity.

Aleksandr said: "We just wanted to donate it to the Children's Cancer Unit Charity - they know better what to use it for and what support they need."

The family told how they were overwhelmed by the generosity of the public who gave up so much of their time to help them.

"I've been shocked the way everything was done and people were using their own time," said Aleksandr.

"They were doing raffles, they were doing some activities and fundraising nights out, or skydives."

Nadezda's family are still struggling to come to terms with the passing of their daughter. Aleksandr said they still have lots of items around the house that remind them of her.

He said each day brings different emotions, but he is heartened that Nadezda will always be a part of their family. "We have another daughter, Leila, and when she is drawing pictures of the family she includes us, the dog, and Nadezda as the angel in the sky.

"It's not that she is being separated, we are still all together, but Nadezda is an angel - she is still in our family."

The funds donated in Nadezda's name will go a long way to help the Children's Cancer Unit Charity, which is fundraising for a new ultrasound scanner.

The family met with Jacqueline Wilkinson from the charity to hand over the money.

She said: "It was a pleasure to meet with Olesia, Aleksandr and Leila to hear some of their fondest memories and stories about Nadezda.

"During their journey and time at the Children's Cancer Unit they received remarkable support and generosity from friends, family and all those who knew of what they were going through.

"The charity is currently fundraising for a new ultrasound scanner, but we will need to raise over £100,000 to purchase one and ensure that the relevant facilities are in place to allow for its arrival to the hospital. The donation that the Laporionok family have made in Nadezda's name will go a long way in helping us reach that target."

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