On March 30th, two teams comprising of staff and students from John Hanson School will be participating in a 24-hour sports marathon to raise funds for the Brittle Bone Society.
Throughout the 24-hour period, other staff and students have volunteered to take part in various sporting activities. All proceeds will go towards funding residential trips for young people with brittle bones, where they can participate in activities such as climbing, canoeing, and zip lining. One such individual who will benefit from this fundraiser is Max, whose story is outlined below.
The school is seeking support for the fundraiser in the form of raffle prizes and refreshments from businesses. If you wish to donate, please visit the following link: https://gofund.me/e94d5a8a. The school premises will be open to the public until 10pm on Thursday, and anyone can come and support the teams during the sports challenge.
Max’s story begins when he was just 12 months old, suffering two broken legs in under two months. This incident resulted in a “dual investigation” involving doctors, police, and social services. The police and medics were trying to understand why Max had broken both legs in a matter of weeks, and his parents were desperate to find out as well. After being told that their son may not come home with either of them, Max’s parents were in a different world than the one they had known.
Max was eventually diagnosed with Osteogenesis Imperfecta (OI), also known as Brittle Bones. Although the “suspicion” of child abuse had been taken away, it was replaced with a lifelong condition that Max had to deal with. Unfortunately, OI is a rare condition, so it is often more likely to be abuse than OI, resulting in children being taken into care. Even after being diagnosed with OI, children who are adopted will still break bones, but they will never be able to return to their natural parents. The aim is to raise awareness of this rare condition, so medical staff, police, and other professional agencies think “Could it be OI?” before taking children away from their parents.
The Edney family received support from The Brittle Bone Society, which inspired them to raise awareness and funds for the society. Max, who has a milder form of Brittle Bones, has broken 20 or so long bones, including his legs, arms, and spine in the last 9 years. Other children with a more severe form of OI have broken over 250 bones. Max has been an ambassador for the Brittle Bone Society and BBC Children in Need and has spoken at several events, including The House of Commons, The One Show, BBC Radio 2, Virgin Radio, and The O2.
The Brittle Bone Society provides emotional, physical, and research support to children and adults with OI. This fundraiser aims to support these individuals, especially teenagers, with outdoor pursuit activities. Max and his parents will be participating in Max’s Marathon, and anyone can contribute to making a difference in the lives of families affected by OI by donating to the Brittle Bone Society at https://www.brittlebone.org/.
