Speaker - Andy White about his family's experience with Chas

The evening’s guest speaker Andy White gave a very personal and moving account of the amazing care given to his son Leo by Rachel House in Kinross and also the hospice’s support to Andy and his wife Gill.

Leo (5) was diagnosed at birth with Ohtahara syndrome, an extremely rare form of epilepsy characterised by hard-to-control seizures and developmental delays.

The disorder affects infants usually within the first three months of life (most often within the first 10 days), in the form of epileptic seizures which can be constant, progressive and life threatening, with many infants not living beyond two years old.

Having had to face and deal with this difficult situation, Andy described how they were referred to CHAS (Children’s Hospices Across Scotland) at Rachel House at a very early stage and of the great help and guidance they have received.

The service supports the whole family with respite care while also helping the children with life-limiting conditions make the most of each day and live life to the full in a warm, welcoming, fun and friendly environment.

Andy told how well they are treated as a family by specialist staff who understand their son’s condition and their concerns and needs.

 He explained how important special memories were and how Rachel House could help to fulfil the couple’s wishes like going swimming with Leo or taking him on a family visit to Andy and his father’s favourite football team’s ground in Perth.

The importance of respite care to allow Andy and his wife some time together to recharge their batteries for a few hours was highlighted and how grateful they were for this as their son needs 24-hour care and observation which means they get little sleep or time to themselves.

Respite care at Rachel House can be also provided at home by specialist nurses from CHAS but this has unfortunately been limited since last March due to the Covid pandemic.

Andy and his wife are dedicated to Leo’s care but are also very realistic and open about their son’s condition and his future.

Andy wanted to make members aware of the great importance Rachel House has played for him and his wife and other families and what a special place it is.

Andy was introduced by Graham Dalton who also proposed a vote of thanks.

CHAS has two centres, Rachel House and Robin House in Balloch, and also provides care-at-home services in Aberdeen and Inverness. It costs £16 million a year to provide all its services. It receives about £7m from the NHS and councils and the rest it has to get from fund-raising and donations.