'We were told to plan my little girl's funeral, this could be her last Christmas'

A dad has told of his heartbreak after being told to plan his little girl's funeral.

Isla Loudry was initially believed to have Rett Syndrome when nursery staff noticed that her speech was not developing properly, the Liverpool Echo reports. But doctors later found that she has Niemann Pick type c - a rare disease that affects one in 150,000 people.

Her dad Darren, 42, said that as a toddler Isla was previously hitting all of her 'major milestones'. She 'fought like a warrior' since her diagnosis.

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But the now eight-year-old's condition has deteriorated due to the progressive genetic disorder - which can relate to worsening function of the nerves, brain and other organs over time. Darren, from Netherton, said he was told by medics to plan Isla's funeral which he said was 'one of the hardest things we've ever had to do'.

On his daughter's condition, Darren said: "She has dramatically changed. Isla is now completely non-mobile, she is peg fed and has up to ten seizures a day and up to ten per night.

"She has gone from this bubbly little girl to bed bound, it’s horrible to see. We were told by doctors that she has 12 months left to live, but she's passed that.

"She is a little warrior, she is so strong. Within the last 12 months we found she has regressed even more. Isla is literally bed bound now and we’re at the stage where we are living day by day, we don't know what will happen tomorrow to Isla.

“We have been told by the palliative care team to prepare for her funeral. Planning for my daughter’s funeral was by far one of the hardest things we've ever had to do.”

Darren added: “It’s been a struggle every single day, trying to deal with the emotions and day to day living of trying to do everything you can to create memories. Her general day-to-day living is hard. But every day we get up and we put a smile on our face.

“Early on in Isla’s journey, when we were broken, we promised ourselves that we need to smile because she needs to know we are happy around her and doing the best we possibly can for her. We're so glad she doesn't feel any sadness.”

Darren has documented Isla’s journey on their family TikTok, @justushardys, to create awareness of her condition. He also has a song coming out dedicated to his daughter, which he hopes can get to number one in the charts before Christmas.

He said: “It could be her last Christmas, it would mean everything to be able to get the song for her in the charts and to create awareness for what Isla does have and has gone through.

“There are only 1,000 in the world, only 100 in the UK and Isla is the only person to have it in Liverpool. I want to make as much noise as possible about her rare disease.”

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