A dad has spoken of his devastation after his young daughter was diagnosed with a rare disease - and told by doctors she won't live past her 12th birthday. Darren Landry said his little girl Isla was reaching all her "major milestones" as a toddler.
However, when she went to nursery at the age of three, staff noticed that Isla's speech was not developing as it should have been, the Liverpool Echo reports. Medics initially thought the youngster had Rett Syndrome, but after investigating her symptoms, she was diagnosed with Niemann Pick type c.
A rare inherited disease that affects one in 150,000 people, it causes cholesterol and other fats to accumulate in the liver, spleen or lungs, with the brain eventually affected too. Darren said that Isla, now six, has "fought like a warrior" throughout her health battle, and he is now determined to make as many "precious memories" as he can for his daughter.
Speaking to the ECHO he said: "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. 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.
Darren who is 40 said: "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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