Lenny's Story

The General & Medical Foundation recently awarded a grant to a family living in Stamford to fund the purchase of some soft play equipment for their little boy, Lenny, who has a rare genetic disorder.  Lenny is nearly 3 years old and was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) last summer. The condition is so rare Lenny is one of only 90 known cases in the entire world.

FOP is an incurable disease which causes human connective tissue, such as ligament, cartilage and tendons, to turn into bone and it is one of the most debilitating diseases known to man.

Lenny was born with bumps on his toes which were originally thought to be bunions, but he returned to hospital after similar lumps appeared on his back, neck and shoulders. Further examination, tests, X-rays and scans at Great Ormond Street Children's Hospital confirmed FOP. In addition to his FOP, Lenny has also been diagnosed with Autism.

The sort of bumps and falls which are part of everyday life for toddlers can have big consequences for Lenny, as they cause his muscles to swell. If he were to suffer a broken bone, it would lead to permanent damage and he would never be able to use that part of his body again. A new bone would grow, and could cause him to end up with a double skeleton.

Already at just 3 years old, Lenny can't move his neck from side to side or up and down, and has lost the use of one of his arms. He could end up in a wheelchair if he damages his legs at any point.

Following the grant being awarded, the G&M Foundation provided Lenny with:

• A dark tent for when he needs some time out for himself
• A large soft play mat so that he can play on the floor and not hurt himself and cause trauma or flare-ups
• A large, soft padded mirror for Lenny’s sensory stimulation
• A Playsofty mirror bug aimed at developing self–awareness

Gillian Close, Co-director of the General and Medical Group, said: 'I was very pleased to deliver the items to Lenny’s Mum, Stacey, along with a bunch of flowers for her. Unfortunately on my visit I didn’t get to say hello to Lenny as he was attending an appointment at Great Ormond Street Hospital on that particular day. But Stacey described him as always happy and smiling and, despite having a lot of flare-ups all over his body right now, she said he just gets up each day and gets on with his day-to-day activities. She said of Lenny, "He’s just incredible".'