Ukraine: Girl with rare disorder now living in NI 'would have died'

Four-year-old Vlada has a rare genetic disorder called Batten disease

The mother of a four-year-old girl with a rare genetic disorder thinks she "would have died" had they not fled Ukraine and moved to Northern Ireland.

Vlada and Daria Yakovenko left their home in Ukraine when the war broke out.

When they reached the Polish border they met retired pharmacist Jacinta Curran, who was part of a delegation from Chernobyl Aid Newry.

Little Vlada had spent weeks without medication, sheltering underground from bombs.

Jacinta had not travelled to the region thinking she would return with refugees.

However, she felt her only choice was to take the mother and daughter to Northern Ireland for medical help.

But because they travelled to Northern Ireland through Dublin and did not apply in advance, they didn't qualify for the Homes for Ukraine scheme.

• Watch: Spotlight - Inside the Refugee Crisis

And without paperwork, Vlada waited three and a half weeks for medical treatment in Northern Ireland.

Daria told BBC News NI: "It was a very big stress for me and my daughter because my daughter has a serious disease.

"She needs constantly special medicine and food and when we got here we had to wait a very long time. I was very worried."

Retired pharmacist Jacinta Curran met the mother and daughter on the Polish border

Jacinta said: "At this point she was choking, her swallow had gone.

"I honestly thought she would die and that I would be held responsible for her death.

"I hadn't anticipated taking anyone home, it was the furthest thing from my mind but what was I supposed to do?

"Really it was a matter of life and death.

"You wouldn't even leave an animal the way the child was left. I couldn't believe it was happening."

That was back in March.

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With the help of a local GP, Vlada did receive medical assistance and Daria describes the care she's received since as "amazing".

But Vlada has Batten disease which is progressive, and since coming to Northern Ireland she has lost her sight.

Her condition will eventually prove fatal.

Daria and Vlada have applied to stay in Northern Ireland under the Ukraine extension scheme

Daria said: "She's my life. I don't know what I'll do without her. It's so sad.

"Life is better here. I think if my daughter was in Ukraine she would have died."

But with the medical battle under control, next up was a visa battle.

Vlada and Daria had been granted permission to stay in the UK for six months but that was due to run out on 22 November.

Following a query by the BBC, the Home Office confirmed on Tuesday that their visa had been extended to 22 November, 2025.

'She's good for me too'

After all they've been through together, Jacinta, Daria and Vlada have formed a special bond.

Daria said: "Jacinta is very kind, an incredible woman. It's my second mum."

Jacinta describes Daria as "a lovely warm girl".

"With all that she's going through, she still tries to help and support me because she knows I don't get money under Homes for Ukraine and she worries about that.

"When I'm tired, she's always fussing over me. She's good for me too. I just love her."

Homes for Ukraine Scheme

• 1,819 Ukrainian refugees have arrived in Northern Ireland under the Homes for Ukraine scheme and the Family scheme

• Sponsors are subject to safeguarding checks

• 1,075 addresses have been referred for checks

• 53% have been completed

• 44% have been found suitable, pending final checks

• 363 sponsors have so far received their £350 a month thank you payments

• £505,750 has been paid in total so far

Source: The Executive Office

Sarah Henry is the solicitor acting for the mother and daughter

Daria and Vlada's solicitor Sarah Henry said that securing a visa extension has proved difficult for many people who entered Northern Ireland through the Republic of Ireland.

She told BBC News NI: "When we started to look into the visa options for them, we discovered that there wasn't really a viable solution for anybody who had crossed from the Republic of Ireland into the north without going through one of the two schemes - the Homes for Ukraine scheme or the Ukraine family scheme.

"Other Ukraine refugees arriving in other parts of the UK or Great Britain were able to avail of this six month permission to stay immediately but because the Irish border isn't subject to immigration control, many fell short of that.

"We hoped the Home Office would have introduced a concession for people who have been living with sponsors, who were unable to avail of the Homes for Ukraine scheme or claim for the £350 a month because they didn't fall in under it because medical attention was the priority at that time.

"They couldn't wait in Dublin or Warsaw for a visa because the situation was so urgent and dire."

A spokesperson from the Home Office said: "We will always work to resolve situations like this when possible and are pleased to have done so in this case.

"In response to Putin's barbaric invasion of Ukraine, we launched one of the fastest and biggest visa schemes in UK history. Over 143,000 Ukrainians have now arrived safely in the UK through our Ukraine visa schemes."