‘’Thank goodness Demelza welcomed us with open arms,’’ says David, dad to seven-year-old Finlay who suffers from an extremely rare genetic condition. ‘Without Demelza we would be struggling for sure.’’

Soon after Finlay was born, David and his wife Petra realised something was wrong.

"When he was five weeks old, you realise you haven’t got the baby you thought you had. Something wasn’t right. He wouldn’t smile.’’

Finlay is one of about five children in the UK to be diagnosed with Grin2b Syndrome. This has left him with severe developmental problems. Bendy joints mean he is unable to stand, he can’t walk, or talk, has vision impairment and is prone to severe epilepsy.

Before the pandemic hit, Demelza care staff give four hours of their time to help put Finlay to bed at his Crowborough home in East Sussex. The charity also provides respite care to the couple, who have another son, 12-year-old Luke.

“Finlay likes lights and sound” explains David. “He uses the sensory room at the hospice and loves the lovely tropical swimming pool. He goes absolutely crazy in the pool.”

Last year, the family met Simon Cowell when he visited the Kent hospice in the lead up to Christmas. ‘’We had pictures with him. He was such a nice guy. We had a lovely afternoon.’’

The Coronavirus pandemic has brought its own challenges. Hospital trips are even more daunting and personal protective equipment has been tough for Finlay, who’s all too keen to pull off any face masks.

"Demelza has been a massive help during the COVID-19 outbreak,'' explains David.

When the first lockdown was imposed, they were allocated two staff, Jo Taylor and Lia Dear.

"They were amazing and formed a bubble with us.’’ Despite the restrictions created by the lockdown, this enabled Finlay to get the help he needed every weekday without fail.

A trip to Kings College Hospital in London for specialist treatment was also required.

"It was a little unnerving going to a major London hospital at the height of the pandemic. But all was fine, Lia, a nurse, accompanied us for the day."

Finlay also spent a week at the Eltham Hospice at the start of Autumn where he was able to be wheeled around the garden. Daily bath times also proved to be big fun.

"The staff adored him and said he is welcome back any time,’’ says David. "The staff have been there for us -- either in our home or on hospital trips to London."

The family are now looking forward to Christmas and already had their tree up in November– much to Finlay’s delight. ‘’I can’t imagine where we would be without Demelza. They are the only ones that have really come out to help us. They are all so lovely, so friendly and accommodating” says David.

 

Please find out more and donate what you can to Demelza's Christmas Appeal.