Bushey Synagogue was packed to capacity on Shabbat for the barmitzvah of Marc Lebe, who suffers from Duchenne muscular dystrophy, an incurable muscle-wasting genetic condition which leads to disability and premature death.

An integral part of the community since his birth, Marc has been unable to walk since he was 10, is losing movement in his upper limbs and has moderate learning difficulties.

Nevertheless, he took an active role in the service, reciting the blessings over his portion and singing the closing Anim Zemirot prayer with his friend Gideon Benedyk.

Family and other friends also took part in the service and there was additional support from his 15-year-old sister Katie, who normally runs the shul’s youth service and is described by minister Rabbi Meir Salasnik as “one of the most involved teenagers in the Bushey community”.

Marc’s parents Lisa and Russell described the occasion as “very moving and emotional. We never expected that Marc would be able to achieve what he did, but he was superb.”

He will be donating his barmitzvah money to Camp Simcha — a charity dedicated to improving the quality of existence for children with life-threatening diseases — in gratitude for the help it has given him.

The Marc Lebe Trust, set up by the Lebe family 10 years ago, is continuing its fundraising efforts for research into a cure for his condition.