A dad has spoken of his heartbreak after learning his little girl won't live past her 12th birthday. Darren Landry said his daughter was hitting all of her 'major milestones' before the family received her 'devastating diagnosis'.
The dad, 40, from Sefton, said nursery staff first noticed his daughter Isla's speech was not developing properly when she was around three-years-old. Doctors initially suspected she had Rett Syndrome, but were soon told the had a rare life-limiting disease that affects just one in 150,000 people.
Every day, the now six-year-old lives with Niemann Pick type c. This means she can no longer walk unassisted and is 'dying in front of our eyes', said dad Darren. He told The Echo that she 'fought like a warrior' since the diagnosis and that he is determined to make as many 'precious memories' as he can for his daughter.
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"Isla only lost her mobility four weeks ago but the regression has been so aggressive. Now she can't walk unassisted, she is dying slowly in front of our eyes," he said.
"We were all over the place as a family when we got the diagnosis and the news was devastating. We are just staying positive and doing all we can to make Isla's life special, we are not going to let the situation get us down."
The life-limiting disease affects the body's ability to metabolize fat within cells which malfunction and die. The condition affects the brain, nerves, liver, and bone marrow and is usually diagnosed in infancy.
Darren said that Isla 'totally regressed' during lockdown when she stopped talking and was unable to walk properly. Doctors have now told Darren he has a maximum of six years left with his daughter, even with medical treatment.
He added: "It is all quite new as we only got the diagnosis last week. Half of me is saying Isla is still here but in between I'm inconsolable.
"I don't think Isla understands what is going on and she has started having seizures but she is an absolute warrior princess. Her strength astounds me everyday.
"Even though we are on an emotional roller coaster we are just doing our best to keep things normal as a family. We are just going to spend as much time as we can with her and every day is precious to us.
"From now until she is 12, it's not about going to work every day, it's about spending the precious time we have with our daughter."
Darren has set up a GoFundMe page with his partner and Isla's step mum Katie. If you would like to donate to the page more information can be found here.
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