Charity netball tournament being held in Baldock to raise money for child with rare neurodegenerative condition

PUBLISHED: 08:32 24 May 2018 | UPDATED: 10:22 29 May 2018

The family of Monnay Johnson, who suffers from the rare Batten's Disease, are raising money towards her treatment. Picture: Kelly Johnson

The family of Monnay Johnson, who suffers from the rare Batten's Disease, are raising money towards her treatment. Picture: Kelly Johnson

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A family from Letchworth and Hitchin have organised a charity netball tournament to raise money for a young girl with a rare condition.

The family of Monnay Johnson, who suffers from the rare Batten's Disease, are raising money towards her treatment. Picture: Kelly JohnsonThe family of Monnay Johnson, who suffers from the rare Batten's Disease, are raising money towards her treatment. Picture: Kelly Johnson

Six-year-old Monnay Johnson was diagnosed last spring with Batten disease, a fatal neurodegenerative condition with no cure.

Monnay has had experimental gene replacement therapy in the United States in a bid to slow the effects of the disease – which include blindness, losing the ability to walk, muscle spasms and premature death – or even stop its progression.

But to return to the USA for further treament, the family need to raise more funds – and have organised a netball tournament at Baldock’s Knights Templar Sports Centre on Saturday, June 2, with the hope of raising £2,000.

In addition to the tournament, Monnay’s godmother Serena Morris has set up a GoFundMe page – with a target of £20,000.

The family of Monnay Johnson, who suffers from the rare Batten's Disease, are raising money towards her treatment. Picture: Kelly JohnsonThe family of Monnay Johnson, who suffers from the rare Batten's Disease, are raising money towards her treatment. Picture: Kelly Johnson

Her mother Kelly Johnson told the Comet: “We are really grateful that Monnay’s godmother has been leading the efforts. The funds raised so far have helped us with travel to the USA and alleviating a degree of pressure.

“The netball tournament will be a great opportunity to have fun with friends, family and hopefully wider members of our community while raising money for Mon’s GoFundMe and the charity which helped fund our first trip to the USA.

“Equally, this is an opportunity to raise greater awareness for this rare form of Batten disease.”

Sadly, the five-year-old is already suffering some of the effects of the disease.

Serena explained more, saying: “This disease rips abilities and life away from children. Monnay is already suffering – finding it very difficult to walk so she has to travel in a wheelchair. She has regular muscle spasms and seizures daily which are being kept under control with vital medication.”

Monnay is due to travel to America for her second vital progress check on June 7, with funds being crucial to the continuation of her treatment.

The participation fee for the tournament is £10, while under 16s pay just £5. There is also a voluntary fundraising target of £50 per person.

You must be over the age of 12 to participate.

To register visit tickettailor.com/events/monnaysbattensdiseasefight/169262. To donate visit gofundme.com/monnays-fight-with-batten-disease.

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