Every moment of every day is a precious one for Sarah Sheridan and her two children as they face the heart-break of her husband Matthew’s terminal illness.
Mr Sheridan of Freemans Reach remembers how his heart sank when doctors told him in October last year that he will eventually lose the ability to walk, talk and perform basic functions.
While he is still able, he is on a mission to create precious memories and experiences for his boys Rylan, aged seven and Hudson, aged one.
The 34-year-old suffers from cerebellar ataxia, a rare terminal condition which has no cure and targets the part of the brain which controls muscle co-ordination.
His body will eventually shut down after slowly losing control of his ability to perform basic functions. He will still be aware of his surroundings.
After countless counselling sessions, his wife Sarah decided to embrace the quality time they have left together and take each day as it comes with a positive attitude.
She said neither the doctors nor the family know in what condition he will wake each morning.
‘‘Over the past 10 months, Matt’s health has rapidly decreased a lot quicker than doctors thought,’’ Mrs Sheridan said.
‘‘He can’t carry our baby boy now and can barely keep himself balanced without supporting himself. He relies on the pram to walk most times.’’
Mrs Sheridan said she asked herself why this was happening to her family.
‘‘I’m juggling things on my own while working four days. But we just need to get up and keep going. Nothing else can be done.’’
Since February, Mr Sheridan has been in and out of hospital for six broken ribs, scaring to the lungs, a collapsed lung, pneumonia and difficulty in breathing.
He is unable to work and the family now relies on Mrs Sheridan’s job as a charity worker at the Royal Institute for Deaf and Blind Children.
Mrs Sheridan said Rylan was greatly affected as he ‘‘knows his dad is sick’’.
‘‘Rylan was supposed to go motorbike riding with his dad but now he needs someone’s help to take him. It’s hard for us to handle and even harder for Rylan to understand.’’
This heart-aching reality has prompted a group of the couple’s friends to organise a gala dinner to raise funds for the young family and help relieve some of the financial burden, at least for the short term.
Good friend and one of the organisers Myra McDonald said the group wanted the family to get on with being happy while they can.
‘‘It may be one of the last times they could have a good night out together before the condition kicks in for good,’’ she said. ‘‘All the money raised will go to their living expenses.’’
The condition receives no funding, no research and no support world wide.
The Gala Dinner will be held in the Vineyard Hotel at 6pm on Saturday, May 30.
The organising committee Myra, Kim and Kellie promise a night of live music, games, DJ’s an auction and raffles.
Tickets are $80 per person and include all the entertainment, a three course meal and soft drinks.
They hope to source donations to be raffled off as well as some major prizes for an auction to be held on the night.
The group are looking for any contribution, big or small with all donating companies being promoted throughout the evening.
Email: sherogaladinner@outlook.com
or call Myra 0404162776, Kim 0402137373 or Kellie 0410457515.