Urgent appeal to find bone marrow donor for Coventry baby

[dutchman]

Baby Nevaeh does not know what the outside world looks like.


Nevaeh with her grandfather Carl Price

She has spent the last eight months fighting for her life on a hospital ward 25 miles from her Coventry home.

Her best friend is the television set that hangs above her bed.

Nurses even fitted a plastic mirror to her cot so her reflection could keep her company when she woke up feeling lonely and afraid.

It does not have to be this way. A bone marrow transplant could cure her rare blood disease.

But doctors cannot find a match – and time is running out.

Granddad Carl Price said: “We want to watch Nevaeh start crawling, hear her first word and take her to the park to feed the ducks.

“I pray to God she will get the chance to do those things.”

Nevaeh began suffering from a red rash when she was six weeks old.

Several weeks later a large bump began to grow on her head.

Tests confirmed she had a condition called LCH, a disease similar to the blood cancer leukaemia.

Worse was to come. The swelling soon spread to her abdomen and doctors discovered she had another, more serious disease called HLH.

Doctors had to send blood samples to Germany to find out whether Nevaeh’s case was terminal.

Carl, who works at Walkers Snack Foods in Baginton, said: “The results showed there was hope, but the outlook is still grim.”

Regular courses of chemotherapy cannot cure the 11- month-old.

Her only chance of survival is an urgent bone marrow transplant.

However, none of her family are a match and so far the charity Anthony Nolan has been unable to find a suitable donor on its register.

So they are urging potential donors to come forward. They have already been overwhelmed by the response.

Nearly 9,000 people have joined their Facebook group, with well-wishers donating money, gifts and even a VIP trip to Euro Disney.

Carl said: “We are appealing for absolutely everybody to help us.

“God forbid anything should happen to Nevaeh, but if we prevent one person going through all this, it won’t have been in vain.”

Hemophagocytic lymphohistiocytosis (HLH) causes the white blood cells to malfunction and destroy other cells.

Fewer than 10 children in the UK are diagnosed with the disease every year and doctors at Birmingham Children’s Hospital have never seen a case like Nevaeh’s.

So far chemotherapy has kept her condition under control, but each time doctors try to reduce the dose the disease resurfaces.

They do not know how much longer Nevaeh can hold on.

Dr Sarah Lawson, paediatric haematologist at Birmingham Children’s Hospital, said: “We need to perform a transplant as soon as possible – certainly by the end of the year.

“We cannot afford to miss this window of opportunity.”

About 1,600 people in the UK need an urgent bone marrow transplant.

Patients and donors must have the same tissue type, but finding a match is hard as there are millions of combinations.

Donors with the same ethnicity are more likely to be a match.

However, Anthony Nolan warned a shortage of ethnic minorities on its register means white Europeans are more than twice as likely to find a donor.

Spokeswoman Lizzie D’Angelo said: “Baby Nevaeh desperately needs a life-saving transplant, but because she is mixed race we can’t find a match. We urgently need more donors from diverse ethnic backgrounds to come forward.”

* Visit the family’s Facebook group Help Save Our Baby Nevaeh. To join the donor register visit http://www.anthonynolan.org.uk.

[dutchman]

Donor comes forward to help Coventry baby Nevaeh

A BONE marrow donor in America has agreed to help Coventry baby Nevaeh, the Telegraph can reveal.

The family already knew the potential donor was a good match, but faced a nervous wait to find out if he was still fit and willing to provide the priceless stem cells.

Adorable little Nevaeh is now due to undergo a lifesaving transplant shortly before Christmas to treat her two rare blood diseases.

The news lent a celebratory atmosphere to a family fundraiser held at the Walsgrave Working Men’s Club in Woodway Lane on Friday night.

Grandfather Carl Price said: “It’s fantastic news. This guy is basically Nevaeh’s guardian angel.”

The family organised the fundraiser to support donor charity Anthony Nolan and Ronald MacDonald House at Birmingham Children’s Hospital, where Nevaeh is being treated.

Many of the well-wishers who turned out to support the event had never even met the family before.

Carl said: “You hear a lot of bad things about Coventry, but so many people have come forward to help. We have been overwhelmed by the response. Coventry people don’t sing their own praises, they get on and get the job done.”

Live music was provided by local band The Difference, while city schoolgirl Sabrina Keshani treated guests to some Bollywood dancing.

The 13 year-old, who has been dancing for nine years, has never met baby Nevaeh. However, she was so moved when she heard the story that she was determined to help the family.

Her mum also offered to help sell tickets to her NHS colleagues.

Sabrina said: “We saw Nevaeh’s story in the newspaper and we wanted to contribute in some way.”

The fundraiser is on course to collect thousands of pounds. Before Friday night volunteers selling key rings had already raised more than £300.

Meanwhile a Just Giving page had received more than £500 of pledges, while an online auction had secured a similar sum.

On the night there was a sponsored head shave, face painting and raffle, while bar staff and a mobile burger bar pledged their profits to charity.

Family friend Trisha Villiers also had a special story to share. She became a bone marrow donor to her older brother when she was just 13 years-old.

Trisha said: “He has two children now and is doing really well, so we are living proof that a transplant like this can have a happy ending.”