Woodhall Spa mum talks about son's progressive illness

A devoted mum has spoken of the '˜overwhelming support' she has received since her four-year-old son was diagnosed with a progressive condition.
Freddy playing in the snow. EMN-180313-150648001Freddy playing in the snow. EMN-180313-150648001
Freddy playing in the snow. EMN-180313-150648001

Emma Cerklewicz is mother to Freddy who until December last year was able to live a happy and healthy life.

A few weeks before Christmas, Emma received the devastating news that Freddy has a life-limiting illness.

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He was diagnosed with Becker/Duchenne Muscular Dystrophy - a rare muscle wasting condition that occurs almost exclusively in males.

All smiles as Freddy doesn't let his condition stop him! EMN-180313-150508001All smiles as Freddy doesn't let his condition stop him! EMN-180313-150508001
All smiles as Freddy doesn't let his condition stop him! EMN-180313-150508001

Actual muscle weakness tends to appear in early childhood and worsens rapidly.

Affected children may have problems sitting, standing, and walking.

They are usually wheelchair-dependent by adolescence.

Emma, who lives in Woodhall Spa, explained the impact it will have on her son.

Freddy Cerklewicz. EMN-180313-100439001Freddy Cerklewicz. EMN-180313-100439001
Freddy Cerklewicz. EMN-180313-100439001
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She said: “As he gets older, his muscles will weaken and turn to fat.

“Eventually, he will be in a wheelchair.

“It is worrying as he is getting weaker as other children get even stronger.

“He is in his prime now, until about the age of seven.”

Headteacher Helen Wines holding a T-shirt for Muscular Dystrophy UK. EMN-180314-131821001Headteacher Helen Wines holding a T-shirt for Muscular Dystrophy UK. EMN-180314-131821001
Headteacher Helen Wines holding a T-shirt for Muscular Dystrophy UK. EMN-180314-131821001

Emma has noticed Freddy is already suffering from the effects.

She explained: “He is complaining that his legs are hurting. He struggles with stairs and getting out of the car.”

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Emma says it was ‘heartbreaking’ When she first heard about Freddy’s condition.

She added: “I was distraught. It is the worst feeling in the world, absolutely heartbreaking.”

All smiles as Freddy doesn't let his condition stop him! EMN-180313-150508001All smiles as Freddy doesn't let his condition stop him! EMN-180313-150508001
All smiles as Freddy doesn't let his condition stop him! EMN-180313-150508001

Freddy joined the reception class at the Edward Richardson Community Primary School in Tetford last September.

Emma said: “He goes to school but is delayed with his speech and language.”

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Headteacher Helen Wines was immediately ‘inspired’ by Freddy - so much so that she is doing a skydive later this year in his honour.

She said she had been thinking about doing a skydive for some time but had never found a ‘real reason’ to do it...until she met Freddy.

Ms Wines said: “Freddy is a charming, sweet-natured child and every staff member thinks the world of him.

“He’s an incredibly positive young man who always gives everything a go.

Freddy Cerklewicz. EMN-180313-100439001Freddy Cerklewicz. EMN-180313-100439001
Freddy Cerklewicz. EMN-180313-100439001
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“He doesn’t turn five until July so he is one of the youngest children in the school but he’s willing to have a go at anything, even if at first it appears to be a big challenge.

“What more inspiration did I need?

“That’s why I decided it was time finally to take the plunge.”

Ms Wines is set to complete a tandem skydive in May at the Target Skysports Parachute Club near Brigg.

She said: “Like Freddy, I will face one of the biggest challenges of my life on May 6.

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“I am sure by the time I reach the ground, I’ll be smiling.”

The skydive will raise money for Muscular Dystrophy UK.

Ten per cent of the money raised will go to a fund specifically for Freddy - and the remaining 90 per cent to the charity.

Emma said: “It is so overwhelming that the school wants to help.

“It means the absolute world.”

Emma and Ms Wines have set up Just Giving pages to collect donations.

• Click here to support Freddy and here to support Ms Wines.

A Facebook page has also been set up by Emma which can be found here