Kent Grandmother Hosts 'East End' Disco to Fundraise for Grandson with Spinal Muscular Atrophy

A devoted grandmother from Smarden, Kent, is organizing a lively, "East End"-themed disco night to raise funds for her three-year-old grandson, Sidney Cooke, who has type 1 spinal muscular atrophy (SMA), a rare genetic disorder. The event will take place on Saturday, October 28, at the Brandon Groves Community Club in Essex, running from 6:30 p.m. until midnight. The night promises live music, dancing, a welcome drink, dinner, and an exciting auction.

Sidney’s Journey with SMA

Sidney, who lives in Yalding, Kent, was diagnosed with SMA type 1 just four months after birth. This rare genetic condition affects muscle strength and mobility. Fortunately, Sidney received a £1.8 million dose of Zolgensma, the world’s most expensive gene therapy drug, soon after his diagnosis. While this treatment greatly improved his quality of life, there is still no cure for SMA.

As Sidney grows, he requires ongoing therapies and specialized equipment, most of which are not funded by the NHS, placing a significant financial burden on his family. These costs include both regular therapies to manage his condition and vital equipment to support his mobility and development.

Fundraising Efforts for Sidney’s Essential Needs

Sidney’s family, led by his mother Sophie, 35, has raised close to £17,000 for essential equipment and therapies. The funds raised help support Sidney’s progress, but the family still faces considerable expenses, particularly for adapting their home. Currently, they are fundraising for a through-floor lift and a specially adapted bathroom, which will require extending Sidney’s bedroom. This project alone is estimated to cost £40,000.

Sophie explained, “Every piece of equipment costs thousands, even when purchased secondhand. His progress relies on us being able to fund the therapies and equipment that allow him to grow stronger. We’re beyond grateful for the support of our friends, family, and community.”

An "East End" Disco for a Cause

Sidney’s grandmother, Gill Hall, 64, is hosting the "East End" disco as a fun and engaging way to bring people together while raising much-needed funds. She shared, “We’re originally from the East End, so this will be an old-fashioned, knees-up kind of party. It’s all about having fun while helping Sidney get the support he needs.”

The event will feature an auction, with exclusive items like VIP boxes at Tottenham and Arsenal football clubs and signed memorabilia. Tickets are £40 and can be purchased through Eventbrite at Super Sidney's Fundraiser.

Support from Tree of Hope Charity

Sidney’s family is also receiving support from the children’s charity Tree of Hope, which assists families in fundraising for children with healthcare needs not covered by the NHS. The charity helps provide financial support, gift aid, and corporate sponsorship. Tree of Hope CEO Becky Andrew expressed her support: “We’re pleased to be supporting Sidney’s family to ensure he receives the necessary care and equipment, and we hope the disco is a great success.”

How to Help

To donate to Sidney’s fund or learn more, visit Tree of Hope's page for Sidney. For those who wish to attend the disco and show their support, tickets are available for £40, with all proceeds going toward Sidney’s essential medical and therapeutic needs.

This night promises both celebration and support for a worthy cause, offering a lifeline for Sidney and his family as they navigate the challenges of spinal muscular atrophy.