A COUPLE who helped raise £90,000 in memory of their daughter after she tragically died from a rare condition organised a special trip to see how the money is being used for research.
Lymm couple Anne and Paul Scales helped raise funds for research into the rare Kabuki Syndrome in memory of their daughter, Hannah, who died, aged six, from meningitis after her immune system had been weakened by Kabuki.
The couple organised a visit to a Kabuki research group at St Mary’s Hospital, Manchester, to find out more about their work. A total of 21 people went on the trip.
They were welcomed by Professor Dian Donnai who diagnosed the rare syndrome in Hannah – and who was full of praise of the couple’s “spirit and enthusiasm.”
As a result of the fundraising a dedicated researcher, Dawn Struttman, was appointed to work in Professor Graeme Black’s research laboratory at the hospital.
The visitors were given a tour round the laboratory, shown the complex equipment which can look for genetic clues about the cause of Kabuki syndrome and told about the progress of the research.
They also met Peter Mount, chairman of the Central Manchester Hospitals Trust, who also oversees the research endowment funds. He congratulated Anne, Paul and their friends on the “magnificent” fundraising success.
Before returning to Lymm the party enjoyed tea and cakes, and were able to ask questions about the work.
After the trip Anne said: “It was an absolutely amazing visit and everyone was impressed to see exactly what research is being done. Everyone really enjoyed the visit and the team made us very welcome.”
Picture shows Lymm visitors with the medical team during their visit.
