About £250 was raised for the Motor Neurone Disease Association at a care home between Uckfield and Crowborough on Friday.
The money was raised at a coffee morning at Temple Grove, Herons Ghyll, in memory of Alan Skinner, whose wife Anna works at the home.
Anna had wanted to mark the first anniversary of Alan’s death and home manager Alison Barnes, and care quality manager Liz Castle, suggested a coffee morning that she and the boys could be involved in.
Anna, Harry, six, and Ivanka, 12, wore West Ham football shirts for the occasion because Alan was a supporter of the London club from the age of five.
Ivanka’s first-ever outfit from Alan was a baby West Ham kit, including hat, dummy, and bib – all treasured possessions in a memory box – and both boys enjoyed going with him to watch his team play.
The coffee morning was organised by welfare officer Kerry Grace who said care home staff helped the family with making the cakes.
Alan, 56, was diagnosed with Motor Neurone Disease just seven months before his death.
Social services too slow
The onset and progression of the disease was so quick that the family was left struggling on their own with social services too slow to react to help them.
“All our help came from Temple Grove,” said Anna. “The home provided a hospital bed and a wheelchair so that Alan could be cared for at home.”
Anna was still trying to work and so a lot of the nursing fell to Ivanka who even administered Alan’s medication in her absence.
She said: “He knew the dose, and when it should be given, and he also helped look after Harry too, bathing him and getting him ready for bed when I was at work.”
Anna said it was both good and bad being a nurse looking after her own husband. Yes, she knew what had to be done but on diagnosis she had known exactly what would happen over time – she just hadn’t realised it would happen so quickly.
She said the boys had been very strong, going through things nobody should have to go through, helping their father as he lost the ability to walk, eat and drink.
“They have been through so much. It was very difficult for them to see their Daddy becoming so poorly.”
Both boys were keen to contribute to the coffee morning and were pleased to see their own cupcakes for sale there.
Ivanka said: “It feels good helping other families.”
Anna said they wanted to support a group that might be able to prevent other families going through all they had gone through.
The Motor Neurone Disease Association funds and promotes global research into the disease and provides support to people in England, Wales and Northern Ireland, with the disease.
Find local organisations in our Uckfield Directory