Belfast Telegraph

Funds bid for Naomi (7) as she battles illness that affects one in a million

By Angela Rainey

A fundraising drive has been launched to help a seven-year-old Co Down girl who is suffering from a rare condition which causes her body to become paralysed without warning.

Naomi Alves-Areias, from Magheralin, has alternating hemiplegia of childhood (AHC).

Only two children and one adult in Northern Ireland - and 60 people across the UK and Ireland - has the condition.

Caused by a gene mutation, the illness is so rare that it affects only one in every one million people.

Naomi was diagnosed at eight months old after displaying symptoms eight weeks before.

Her mum Kate (34), a night-shift nurse at Craigavon Hospital, said it was a shock when they first witnessed the paralysis.

"Naomi was about six months old when it came to light," she said.

"We had just put her down in her cot. She was grizzly and then we noticed that her arm was at a funny angle.

"When I lifted it, her arm went floppy.

"But after 13 hours it righted itself."

A fortnight later, the paralysis struck again, and Mrs Alves-Areias and her husband Andre (41), a minister at Hillhall Presbyterian in Lisburn, took their daughter to the Royal Victoria Hospital in Belfast.

"It was a scary time for us," said Mrs Alves-Areias.

"The doctors thought she might have a brain tumour and as there was no scanner at the Children's Hospital at the time, we had to wait five days. It was horrendous.

"We were told that there was seven criteria to the condition and tests showed Naomi had it."

Naomi is also under the care of Great Ormond Street Hospital in London, and takes the powerful anti-migraine drug flunarizine three times a day.

As well as paralysis, Naomi experiences chest and joint pain, mobility, speech and development issues.

Her low muscle tone means that some days she crawls on her knees, becomes tired very easily and often needs a wheelchair for outings.

But her parents, who are devout Christians, try to give Naomi opportunities to ensure her life is as free from disruption as possible.

"Naomi is a very loving and affectionate child who loves cuddles and animals," said Mrs Alves-Areias.

"She is a real trooper, independent and stubborn.

"She loves swimming, but is at risk because of low muscle tone and so sports like gymnastics are ruled out.

"We go to the cinema but we are lucky if we stay 10 minutes as she can feel sore. Naomi tried horse riding for the disabled last year and she loved it.

"And she attends the youth club at Hillhall Presbyterian on a Saturday night because my husband is on hand."

Naomi, who is a pupil at Magheralin Primary where she has a classroom assistant, has friends who also help, but she particularly loves big sister Bethany (9).

"Bethany is her best friend," said Mrs Alves-Areias. "When there are times that Naomi has paralysis in her arms and can't do anything, Bethany will feed her and help her with whatever she needs - they are very close."

Over the last four years the family has raised £20,000 towards helping those with AHC.

To further help boost funds and awareness of the condition, Mr and Mrs Alves-Areias have organised a black tie ball on October 20 at the Hilton Hotel in Belfast.

Tickets have sold out, but donations of prizes and funds are still sought.

Donations can be made at https://www.justgiving.com/fundraising/naomiaa.

Belfast Telegraph

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