Abstract
Simon Sheehan, Chairman of the East of Scotland Section, presenting the cheque for £2000 to Tracy Alexander, Founder of the Brionni Trust. Also in attendance are local committee members Graham Taylor, Graham Thackeray and Ruslan Kassimkulov
The Brionni Trust was set up by Tracy Alexander in memory of her daughter Brionni.
Brionni was born on 13 January 2000, approximately 3 months later she was diagnosed with spinal muscular atrophy (SMA). This is a recessive neuro-muscular condition causing muscle weakness and respiratory problems. There are several types of the disease; unfortunately, Brionni had SMA Type 1 which is the most severe form. Within a few weeks or months of birth, babies become very weak and have limited movement; this is because most of their voluntary muscles are affected. What they seem unable to do physically, they appear to compensate for with facial expressions. With Brionni, it was her amazing big blue eyes and her incredible infectious smile.
The last 3 months of Brionni’s life were spent between home, hospital and Rachel House, at that time Scotland’s only children’s hospice. Brionni needed someone with her 24 hours a day. She was fed every 3 hours, but most of all, she needed someone to play with and ‘talk’ to. She thrived on attention and loved company. Sadly, Brionni passed away on 13 December 2000, she was 11 months old.
This year, the Trust has been busy. They have furnished a new garden room at Rachel House, which is used for counselling the bereaved and youngsters facing terminal illness. They have bought toy packs for special-needs children and also donated funds to a little girl from Sauchie who has cancer and needed life-saving treatment.
Your donations on the night at the annual dinner will make it possible for the Trust to do more good work for the local community and for those in need. Thank you once again for your kind generosity on the night, and also to Venesky Brown and Cordell who unfortunately were unable to attend at the dinner, but donated their table fee to the charity.