Stepping out for yellow day

Stepping Stones Pre-School has raised money for Children's Liver Disease Foundation as one of its pupils, Benjamin Edwards (centre in white T-shirt), has a rare genetic liver condition.

Stepping Stones Pre-School has raised money for Children's Liver Disease Foundation as one of its pupils, Benjamin Edwards (centre in white T-shirt), has a rare genetic liver condition.

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Pupils at Stepping Stones Pre-school took part in the annual Big Yellow Friday event to raise money for the Children’s Liver Disease Foundation as one of their classmates suffers from a liver condition.

Four-year-old Benjamin Edwards, from Wisbech, has alpha-1 antitrypsin deficiency (A1AT), an inherited condition where a person lacks a protein made by the liver.

Because Benjamin’s liver doesn’t make this protein, an enzyme present in his lungs can attack normal lung tissue. A1AT suffers often develop Chronic Obstructive Pulmonary Disease (COPD) or emphysema in later life. He may even need a liver transplant one day.

Little Benjamin was diagnosed with the condition last July after being unwell for much of his life. Mum Cathy Edwards said it was a massive shock when they found out.

“You don’t expect your child have a problem like that,” she said. “It turns out myself, my husband Simon and our one-year-old son Oliver are all carriers, but Benjamin is a full alpha.”

Benjamin has suffered from wheezing since he was about six weeks old, which was originally put down to asthma. Cathy said when he gets something like a cold, it takes him a long time to recover and has taken countless steroids to shift illnesses over the years.

The Edwards found out about the Children’s Liver Disease Foundation after Benjamin’s diagnosis, as every new family is given an information pack to help answer any questions they might have.

The special yellow day was held at Stepping Stones Pre-school in Leverington, where Benjamin is a pupil. The children dressed in yellow clothes and there were lots of fun activities themed around the colour, such as colour collect activities.

The pre-school raised £155 for the charity, which was added to by Simon Edwards’ own fundraising, resulting in a total of just over £400.

There is no cure for A1AT and although progressive liver or lung disease affects only a minority, it can be serious, so regular monitoring of those with the condition is important. There is research going on and protein injections are being given in some countries, but that has not reached the UK yet.

But there is no reason why Benjamin cannot enjoy a normal life like any other child.