Brave kids 20 videos

17-month-old Nina Warnell from Maidenhead was born with a very rare condition known as Bubble Baby syndrome. This has caused health problems that could’ve proved fatal if left unnoticed.

Born in Poland, her father Graeme said that the birth had gone well, and that as far as he and his wife knew, they had a healthy 9lb baby girl.

Though everything had initially run smoothly, the parents began to notice that Nina was feeding less but sleeping a lot more. Breast feeding was successful at first, so they were understandably concerned.

‘It was the hardest time of my life, I didn’t know what was wrong with my baby,’ said mum Aga.

Nina was then diagnosed with Severe Combined Immunodeficiency Syndrome. More commonly referred to as ‘Bubble Baby’ Syndrome, the extremely rare disease affects only 1 in 300,000 babies, and has left Nina without an immune system.

As her body is unable to defend her, something as insignificant as a common cold could kill little Nina. Therefore, her family has to remain vigilant in preventing Nina from coming into contact with any germs or injuring herself in anyway.

This means Graeme and Aga are always careful to wash their hands, clean surfaces and sterilise toys. Whenever she goes out in the pram, Nina must be protected with plastic sheeting.

The team at Great Ormond Street Hospital saved Nina’s life by creating a temporary immune system for her, and recommending that she receive weekly enzyme replacement injections and take up to 15 different medications a day.

But things are looking up for Nina. She has started an experimental form of gene therapy that hopes to help her produce her own enzymes. She’s already undergone chemotherapy and had her bone marrow resynthesized.

After six months, Nina will have a review to check on her progress, and mum Aga hopes that her daughter will one day be able to live a normal life.

TAGS: