Generations of a family struck by a triple tragedy gathered in the children’s ward at the Royal Free Hospital to give gifts to the sick children and thanks to the staff who took care of their children over the years.
Akash, Jayant and Kiran Hirani, who were all born with the same genetic disorder, Leigh’s disease died aged five, 21 months and 17 months respectively.
Leigh’s disease is a rare neurometabolic disorder that affects the central nervous system.
It is an inherited disorder which usually affects infants between the age of three months and five years and rarely teenagers and adults. As the disorder progresses symptoms may include generalized weakness, episodes of lactic acidosis, which can lead to impairment of respiratory and kidney function.
Vasudev Hirani, father of the children, said: “I felt that we were taken good care of from all the staff at the Royal Free Hospital, especially with our last born Akash. We were compelled to give something back.”
The family raised around £2,000 which bought scales, measuring equipment and toys including doctors’ sets, racing cars, a drawing board with easel and lots of DVDs.
Vivienne van Someren, consultant paediatrician and clinical director women’s and children’s services, who looked after two of the children, said: “It is very kind of you to remember us after all this time. We are really appreciative of your kindness and generosity.”
Vasudev hopes to start up his own charity to help raise awareness and money for research to help find a cure for the disease.
Notes to editors
1) For further information contact: Aysha Shah, communications assistant, Royal Free Hampstead NHS Trust, 020 7317 7590, email@example.com
2) The Royal Free Hampstead NHS Trust is renowned for its specialist services including liver, kidney and bone marrow transplantation, renal, AIDS/HIV, infectious diseases, plastic surgery, immunology, paediatric gastroenterology, ENT surgery and audiological medicine, amyloidosis and scleroderma. We run a major accident and emergency service, all branches of surgery and medicine, a renal service serving the whole of north London, paediatrics, maternity services, care of elderly people, an adolescent psychiatric service and one of two high security infectious diseases units in the country. We are a leading haematology centre and a major neuroscience base with a network extending throughout north London and into the Home Counties. We have associated internationally recognised research and training programmes. For more information visit www.royalfree.nhs.uk
We are a member of the academic health science partnership UCL Partners. The Royal Free was the only teaching hospital in London to be rated excellent for services and excellent for use of resources in the 2008 Healthcare Commission annual health check.