How Blackpool 'miracle' baby Ava is helping Spina Bifida awareness

Ava, who is just 10 months old, was born with spina bifida and but also had to contend with a life-threatening crisis when a huge cyst on her back split open.

But then an even bigger danger arrived when she developed potentially deadly meningitis, with doctors warning her mum and dad, Emma and Dan Cowley, that she might not survive.

And just when that problem seemed to be over, Ava developed water on the brain (hydrocephalus) and nearly died from organ failure.

Mercifully, the little battler has defied the odds and is now out of hospital ad settled in at home.

Mum Emma, 29, of Grizedale Road, Mereside, says the first six months of Ava's life were particularly traumatic but that the family were given huge support by a little known charity, Shine, which supports those with spina bifida and hydrocephalus.

This week, mum-of-three Emma is staging a family fun day to raise funds for Shine but also to raise awareness of its work so others may be able to reach out to it.

The family fun day takes place at the Freedom Centre on Mereside this Friday (October 22) at 2pm to 8pm, to coincide with Spina Bifida Awareness Week, and will include a bumper prize raffle and tombola.

Emma says she was told Ava had spina bifida before she gave birth and was even asked if she wanted to carry on with the pregnancy.

She said: "When I found out I was pregnant I was so happy even though we was in a pandemic, it felt amazing.

"We had a gender reveal scan privately and was told we was having a girl and we called her Ava.

"Then we had our 20 week scan at Blackpool Vic and that was when we were told Ava had spina bifida.

"Suddenly all my appointments we're at St Mary's in Manchester and we were being asked if we wanted to carry on with the pregnancy as our baby may not walk talk eat for her self or be able to go to the toilet on her own.

"But she was ours and we wanted to do what ever we had to do for her.

"As the pregnancy went on, the cyst on Ava's back got a lot bigger than expected and I was unable to have her naturally as it was to dangerous for her.

"When I went in to St Mary's to have Ava it was the scariest day of my life, not knowing if she would survive."

When Ava was born she was immediately taken over to the neo natal unit at St Mary's.

But the family's problems were only just starting.

After a 10 hour operation Ava's cysts burst open, leaking CSF brain fluid which had built up in her head.

After another operation she developed meningitis and her parents told her the odds of survival were poor - but again she pulled through.

Finally able to come home, there was a further crisis when Ava's head started to swell with hydrocephalus and she was rushed back to Manchester for MRI which confirmed she needed a VP shunt fitted again she pulled through.

In July Ava had to be Intubated , as her organs were failing she had a collapsed lung - but miraculously once again she pulled through and was able to go back to the family, which also includes older sister Ella, aged 12, and Reuben, aged two

Emma added: "The people from Shine were with us every step of the way, day and night.

"Now we want to give something back.

"We want to bring the condition from the back of people's minds to the front to raise as much awareness as possible.

"There are probably some families in Blackpool who have a child with spina bifida who aren't aware of Shine's work."

The family fun day will include a raffle, games for children, cake sales a table top sale and so much more.

For more information on the charity Shine, visit: https://www.shinecharity.org.uk/spina-bifida/spina-bifida