Bubble Baby survivor Zara backs The Journal's campaign to support Foundation

Zara was diagnosed with the rare genetic condition and spent more time in Newcastle’s Bubble Unit than any child treated there

Zara Shaen Albright, 21 who was a patient in the Bubble Unit when she was a baby
Zara Shaen Albright, 21 who was a patient in the Bubble Unit when she was a baby

Student Zara Albright this year celebrated her 21st birthday and has a positive future to look forward to.

Yet it has not always been as optimistic for the young woman who was critically ill as a baby and only had a 50% chance of survival.

Zara was diagnosed with the rare genetic condition, Severe Combined Immunodeficiency Disorder (SCID), and spent more time in Newcastle’s Bubble Unit than any child treated there.

She went into the sterile environment aged just eight months and was not able to leave until she was three.

 

Today the Brunel University politics and history student is backing The Journal’s campaign to raise vital funds for the Bubble Foundation, which supports the Ward 3 unit at the Great North Children’s Hospital.

Zara, who is from Birmingham, said: “When in the Bubble Unit it is like living in a parallel universe. But the Bubble Foundation does as much as it can for the parents and child to live as normal a life as possible.

“I don’t know how parents would cope without the support of the Foundation. I would definitely not have turned out as well-rounded a person without their help.”

Zara was one of the first babies without an immune system to survive a bone marrow transplant, which was donated by her father, Simon, an optometrist.

Over the years medical experts had to circumvent a number of life-threatening complications and Zara had to have a further two top-ups of bone marrow before her immune system finally started working on its own.

“I don’t remember much about being ill or being in the unit,” explained Zara. “It has only been since I was aged 19 that I really started to find out about it all. I was told I was close to death quite a few times.”

Zara’s condition was detected after she was given a TB vaccine and became infected with tuberculosis. Doctors at her local Birmingham hospital thought she had severe anaemia but after blood tests it was identified that she had no immune system and she was quickly transferred to the Bubble Unit in Newcastle for expert treatment.

Her mother Shabina, a social worker, stayed with her daughter the entire time and her father Simon would travel up from their home city every weekend.

Thanks to the Bubble Foundation the pair were able to use accommodation funded by the charity, which meant they could stay near to their daughter and not have to pay for a hotel. Father-of-two Simon, 55, said: “When Zara had been in the hospital for a long time there was a point when I did think she wasn’t going to get through it.

“I feel phenomenally lucky that Zara made it and I’m very grateful that we have got the best NHS in the world.

“The staff at the Bubble Unit kept us very much involved and I felt part of the team, albeit not clinically.

“I don’t look back at what happened as you can’t live in the past.”

Zara is doing well and has not suffered any lasting health complications following her bone marrow transplant. She visits Newcastle each year to get her annual blood test.

As a baby her younger brother, Nicholas, 18, was tested for SCID and was found not to have the illness.

Sadly, Zara’s male cousin died of the condition seven years before she was born at the age of just 18-months-old.

“I have an amazing amount of admiration for my parents as it must have been incredibly difficult for them to watch what I went through,” said Zara.

Why you should help support the Bubble Foundation

Earlier this month, The Journal launched a campaign to raise vital funds for the Bubble Foundation.

The Bubble Unit at the Great North Children’s Hospital, based at Newcastle’s Royal Victoria Infirmary, is one of only two nationally designated services that treats children with little or no immune system.

More than 20 years ago, the Bubble Foundation was set up in support of the service, but this is now sadly at serious risk of closure due to a sharp reduction in donations.

The charity funds money for medical research, equipment, toys and educational aids, and if donations dried up it would be of serious detriment to the region.

If the charity was to close then it would mean pioneering research into immune system problems may stop and the region could potentially lose leading experts in this field.

How you can help The Journal campaign to support the Bubble Foundation

The Journal is urging as many people as possible to support the Bubble Foundation.

Whether it be a sponsored bike ride or fundraising night, we’re calling on our readers to dig deep and help raise vital funds for the charity.

To donate, make a cheque payable to Bubble Foundation UK and send it to: Ward 3, Great North Children’s Hospital, Queen Victoria Road, Newcastle, NE1 4LP.

For more information about the charity visit www.bubblefoundation.org.uk and link in to their justgiving page, email BubbleFoundation@nuth.nhs.uk, go to www.facebook.com/BubbleFoundationUK or Twitter @TheBubbleUK

If you are doing a fundraising event for the Bubble Foundation, or have used the unit, email our Health Reporter at helen.rae@ncjmedia.co.uk.

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