A family from Hook is spearheading a charity event to raise critical funds for research into a rare genetic disorder affecting their young son’s life.

On November 3, 2024, Chertsey Town Football Club will host a star-studded celebrity football match, with proceeds going toward developing the first-ever treatment for MEF2C Haploinsufficiency Syndrome (MCHS), a condition that affects two-year-old Laike and around 360 other children worldwide.

Laike’s mother, Vikki Lawerance, describes her son as a “courageous two-year-old” who faces numerous challenges, including severe developmental delays, seizures, low muscle tone, absent speech, and subtle facial characteristics – all due to MEF2C Haploinsufficiency Syndrome.

Currently, there is no cure for this rare neurological disorder, leaving children like Laike entirely dependent on round-the-clock care.

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“If we can raise the necessary funds, we could potentially recover all symptoms of this condition and change these children's futures,” said Vikki.

Laike was born in March 2022 as part of a large, loving family, but his early months were filled with concerns.

By the age of five months, the boy had yet to hit developmental milestones, and by seven months, he suffered his first seizure.

This triggered a series of medical tests, and by the time he turned two, Laike was diagnosed with MCHS, a disorder that causes severe cognitive and physical impairments.

Laike’s medical journey has been tough, but thanks to the support of his healthcare team and family, he continues to make small but significant strides.

Recently, the insertion of a PEG tube has helped stabilise his nutrition and medication, allowing him more energy for therapy and improving his seizure control.

Vikki shared that despite these challenges, Laike’s infectious laugh and love for cuddles, especially when watching his favorite cartoon "Ra Ra the Noisy Lion," keep the family’s spirits high.

“He’s brought immense joy to our lives, and this event is our way of fighting for a brighter future for him and other children like him.”

The charity event, organised by Sellebrity Soccer in collaboration with the MEF2C Foundation, will feature some of the biggest names in entertainment and sports.

Attendees can look forward to seeing celebrities such as Calum Best, Love Island’s Reuben Collins and Josh Brocklebank, and soap stars Dean Gaffney and Matt Lapinskas take to the pitch for a day of football, fun, and philanthropy.

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Organisers are urging the community to come together, buy tickets, and help fill the stadium to support this life-changing cause.

Oakwood Builders and Developments Ltd and Specialist Builders in Rotherwick have been revealed as the kit sponsors for the game. 

Proceeds from the event will support research into MCHS, with the hope that scientists can develop a treatment that will alleviate the symptoms and dramatically improve the lives of children like Laike.

For more information, or to learn how you can support the cause, visit the foundation’s website at www.mef2cfoundation.com or follow their updates using the hashtag #Strive4Five.

You can buy the tickets for the game here: https://www.eventbrite.co.uk/e/celebrity-charity-match-at-chertsey-town-fc-tickets-1006985409467