Boy, 6, has up to 70 seizures a day after parents spotted lump

A six-year-old boy suffers from up to 70 seizures a day due to a rare condition which has left him unable to speak.

When his son Will was born, Adam Ritchie, 35, said a number of small lumps had grown in and around his eyes that shouldn't have been there.

The following day, Will underwent tests at an eye clinic in Arrowe Park Hospital, where parents Adam and Janet from Port Sunlight, Wirral, were later told that he had a condition called Encephalocraniocutaneous Lipomatosis.

The rare condition means Will is unable to speak and it has affected his vision and mobility, meaning he needs the assistance of a wheelchair when walking for long distances outside.

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He has also been diagnosed with epilepsy as a result of the condition, causing him to have between 60 and 70 seizures a day.

Despite the ongoing challenges he faces, Will and his parents are determined not to let it hold him back.

To encourage him to walk more outside and increase the distance he can walk without his wheelchair, Adam and Janet have set him a challenge, to walk 1.5km a day everyday until the end of June – 45km in total.

Mum Janet said she hopes it will encourage others to "push through and achieve something they never thought would be possible", while all the money raised will be donated to Wirral Hospital’s Covid-19 Support Appeal.

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Will Ritchie, 6, (left), dad Adam Ritchie, 35, mum Janet Ritchie, 35 and Ted Ritchie, aged 3

Recalling the journey Will has been on so far, Adam told the ECHO: "When he was born he had flesh in and around his eyes that shouldn't have been there.

"They were little lumps, called ocular dermoids, in both of his eyes.

"So when he was a day old we took him to an eye clinic at Arrowe Park Hospital for them to investigate what it was, which was a bit traumatic for us.

"They noticed there was lumps all over his eyes and they eventually found out that it was this condition."

"He's never been able to speak and his vision is impaired but we don't know how much because he can't tell us. But we know he can recognise us and navigate his way around the house from room to room."

Will was diagnosed with epilepsy when he was nine months old, after he suffered from his first seizure and was rushed to A&E.

It is believed to be linked to his diagnosis with Encephalocraniocutaneous Lipomatosis.

Mum Janet said: "Epilepsy has been by far his biggest battle and he has never had a seizure free day since that dreaded day in February 2015."

Will's seizures vary between ones known as shorter drop seizures and longer tonic or clonic seizures.

Adam added: "He has 60-70 seizures a day. There are days when he has shorter ones and other days when he has full blown ones which is hard.

"He's so easy going considering everything he's been through. He's always smiling and he's easy to look after.

"His condition means he is non verbal so he doesn't understand walking from A to B. So I have to put him in his chair to make him walk outside the house."

However, since lockdown began, Adam said they have been going on regular walks to encourage Will to walk further and have noticed a huge improvement in his walking and balance.

This has inspired them to set Will the challenge of walking 1.5km a day everyday for a month – 45km (28miles) in total.

Adam added: "When lockdown started we thought we've got more time now so we decided to start going out walking with him everyday.

"We have to hold his hand to support him and in case he has a seizure while he's walking but he's doing so well."

He added: "At the weekend we realised he'd done 1.5km, we couldn't believe it. So we decided to set him a goal of doing that everyday for a month.

"It's going really well, he's improving everyday and he gets really excited now and puts his shoes on ready to go out.

"It's brilliant, we're so proud of him."

Adam said the support they have received so far has been amazing, with nearly £4,000 raised for the Wirral Hospital fund so far.

He added: "We can't thank people enough.

"We decided to donate the money to the hospitals on the Wirral because they have done so much for Will and still do."

To donate to the Just Giving Page click here.