'I noticed my son walking on tip toes and he might lose ability to walk'

Caiden Wakerley, 10, might not make the age of 20 after being diagnosed with a two-in-a million mixed connective tissue disease

The mum of a 10-year-old boy who might not make his 20th birthday due to a rare disease says "he just wants to be a normal kid". The mum of a 10-year-old boy who might not make his 20th birthday due to a rare disease says "he just wants to be a normal kid". Caiden Wakerley was diagnosed with Juvenile Idiopathic Arthritis three years ago and will lose the ability to walk without treatment. His mum first noticed he might have a problem when she saw he was walking on his tip toes.

Moving his joints is so painful that he has to miss school, uses a wheelchair and can't play out with his friends. And if that wasn't enough to contend with, the schoolboy was last year diagnosed with a two-in-a million mixed connective tissue disease.

The rare autoimmune disease means the body produces antibodies against its own connective tissue, causing inflammation. There's no cure for the disease and Caiden may not live past his teens unless he can be flown to Italy for treatment.

But Caiden's mum, Dawn, says despite his awful diagnosis, her "fighter" of a son is pushing on. "He won't live past 20 if he doesn't get treatment," stay-at-home mum Dawn, from Accrington, Lancashire, told Need to Know.

"My whole world ended when I found out. He'll lose his ability to walk and he's only 10. He's been through so much for someone his age.

"He knows he has a lot going on. His hands are a mess, he can't grip things. He can't play out like a normal child. He can't ride his bike or go to the park with the other kids. He just wants to be a normal kid. His five-year-old sister can do more than him. It's so rare and I can't find anyone else who's been through it. It's awful and terrifying."

Dawn, 41, said she noticed symptoms of arthritis when Caiden was just three and he started complaining about pain in his hips. She also noticed that he was walking on his tiptoes and unable to hold his head back when she washed his hair.

He now takes medication and wears a machine that sends electors through the nerves to block the pain. The condition affects his neck, wrists, ankles, hips, shoulders and fingers.

Dawn said: "He was complaining in his car seat saying he had numb feet and his hips hurt. We thought it was the car seat so we tried different ones. Around three years ago, we noticed him walking on his tip toes so I took his took the doctors for an X-ray.

"They said he had inflammation and low vitamin D. The doctors couldn't work out what was wrong so we tried physio. He started looking unwell, he looked really skinny and pale. It wasn't right and the school nurse even picked up on it.

"I carried on pushing. We didn't give up. It was frustrating. He had lots of tests. The doctors asked him to put his wrists back and he couldn't, he was putting his elbows down. They realised he had no movement in his wrists.

"He was diagnosed with Juvenile Idiopathic Arthritis which developed into the adult version because it took so long to get him diagnosed. He had medication to relieve the inflammation in his joints so he could move them but then he was in pain because he was moving things he hadn't moved before.

"Then he had an MRI and he was diagnosed with mixed connective tissue disease." Dawn and husband Graham, 38, are fundraising to take Caiden to Italy for medication that would put both diseases into remission.

Dawn said: "There is medication available in Italy that can put him in remission and prolong his life. The NHS doesn't fund it. "We have approached doctors in Italy and said we want the best for our son. We need help. We're hopeful that he can live and enjoy the rest of his childhood.

"We're hanging in limbo. I'm living in the moment. I can't breakdown, I have to carry on and live day by day. When I think about what he's been through, it takes my breath away. He's a fighter. He's been through more than anyone could know."