‘They saved us’ say couple after baby’s shock diagnosis

Dad Lee Jones with daughter Eliza SUS-170420-155017001
Dad Lee Jones with daughter Eliza SUS-170420-155017001

A Sussex family were left shocked and in despair when their baby daughter was diagnosed with cerebral palsy.

Stacey and Lee Jones found themselves reeling when given the devastating news about their little daughter Eliza - but were helped through their pain with the support of a charity group.

Now the couple, from Haywards Heath, want to help others facing the same daunting news and to raise awareness of the group that helped them - the Dame Vera Lynn Children’s Charity.

“They saved us,” said Stacey, 41, adding: “I can hand on heart say that if we hadn’t gone to the charity, I think I would have had a breakdown.”

The couple’s nightmare began in December 2013 when Eliza was seven months old. Stacey knew something was wrong as little Eliza hadn’t reached certain milestones, such as holding her head up, sitting without support and rolling over.

But it was another five months before she was diagnosed with cerebral palsy, which came as a complete shock to the family.

Said Stacey: “The day we got Eliza’s diagnosis will always be the day life as we knew it changed. Lee went blank, I asked a thousand questions but he just sat there.

“We went into that room believing something was wrong, but something that could be fixed. It took ages to sink in. Life seemed unfair, pointless, sad.”

It was luck that brought the family to the Cuckfield-based Dame Vera charity. Stacey was talking to another mum while attending an NHS physio appointment and confided in her how lost she felt. The other mum recommended the charity to Stacey who contacted them and, within weeks, baby Eliza was taking part in special sessions.

The charity uses conductive education – a progressive approach to physiotherapy, teaching and learning that aims to give youngsters aged five and under with cerebral palsy and other motor learning difficulties better control over their movements and posture.

Eliza soon started to benefit and now, aged three, has learnt to be more independent while meeting other children with cerebral palsy, helping her understand she is not alone.

Stacey added: “The team that work there are amazing. They see the beauty of the children and teach them things without them realising they are learning.”

Charity manager Pilar Cloud said: “We aim to show children everything they can do giving them the skills, strength and self-confidence to make early achievements and a foundation from which they can develop further in later life.

Visit www.dvlcc.org.uk