JOANNE Baddams had always been told that she couldn’t have children, so finding out she was pregnant with her son, Jack, was a big surprise.

It was even more of a surprise when Jack was born ten weeks early and suffering from a range of health problems, including Down’s syndrome and holes in his heart.

“We were told that I would be unable to get pregnant without medical help,” explains Jo, from Totton.

“We had made the decision not to go down that route, so it was a huge surprise when I fell pregnant naturally and we were elated.

“When I went into labour early it was very scary, as all you can think about is whether my baby is going to be OK.”

After six hours, Jack was born weighing 3lb 5oz. He was rushed straight to Neonatal Intensive Care to be ventilated.

“It was very distressing to see him so small and vulnerable and I felt was useless as there was nothing I could do to help him.”

A couple of days after their son was born, the doctors told Jo and her husband, Scott, that they suspected Jack had Down’s syndrome, tests then confirmed the diagnosis.

“It was a huge shock,” says the 39-year-old. “At first we worried how we would cope – we had had no knowledge or experience of special needs, but knew enough to know things were going to be very different for us as a family.

“Scott and I are pretty strong characters and we knew we would be able to deal with whatever we had to and our main concern was whether Jack’s diagnosis would hinder his progress in the neonatal unit, but he progressed very well and came home after eight weeks.

“I think every parent wonders how they will be as a parent, and how they will cope with the responsibility. And the hardest thing to cope with was the numerous hospital visits for the first few years of his life, as he had two holes in his heart, obstructive sleep apnoea, nystagmus and vision problems.

“But we took everything in our stride and treated Jack no differently. We learnt to be patient as it takes him a very long time to reach his milestones, due to having severe learning difficulties.”

As Jack, now nine, developed – he needed therapy to help him walk and learn to balance. It was then that Jo realised that there were limited resources available on the NHS.

“Therapies can be expensive and are often not available on the NHS,” says Jo. “Or, if it is available, sessions can be few and far between, sometimes just an hour a month. But those therapies can make such a difference; I knew that in the future I wanted to do something to help families afford them.

“You always worry about money when you have a special needs child as everything costs so much more. It’s a horrible feeling as you want to do the right thing for your child, but it is sometimes financially impossible to be able to provide them with everything they need.”

Jo got her chance when she met Aleksandra Loskot, who, inspired by her daughter’s needs, had started her own private therapy centre, Sophia’s House, when she realised how little was available locally.

Daily Echo:

Aleksandra Loskot and her five-year-old duaghter Sofia

They offer a range of different therapies including NDT-Bobath, Vojta and Sensory Integration.

Alex and Jo put their heads together and came up with the idea to start a charity that would help fund therapies to help special needs children from low income families lead a more fulfilling and active life.

Flutterby Fund was born.

The charity exists specifically to enable low income families access to essential therapy, and more and more applications for help are being received. It is currently funding six children to receive treatment at Sophia’s House – which is run as a not for profit business.

“My hopes are for the charity to prosper and continue fundraising so that we can help as many children as possible,” says Jo.

“It is a wonderful feeling when you receive feedback from a parent on how the funding and therapy has helped their child and because of Jack I know how they feel.

Daily Echo:

Sophia's House 

“Sophia’s House has helped Jack overcome a few of his physical problems, which in turn has made things easier for us as a family, and has also helped to develop Jacks independence.

“Jack is now a very laid back calm and quiet little boy. He is very well behaved and loves cuddles with his mum and dad. He does have a cheeky side though and a wicked sense of humour – someone falling over or hurting themselves he finds hilarious.

“We tend not to look too far into the future, we are very much parents who live in the now. We take each day as it comes and we cross each bridge as we get there.”

The event takes place at Kuti’s in Oxford Street and they are hoping to raise much needed funds to enable them to provide funding for therapy to more special needs children.

To find out more, visit: facebook.com/flutterbyfund.org.uk?fref=ts and facebook.com/SophiasHouseClinic ?fref=ts.