Although, the disease has stunted Lillie’s growth and disabled her to walk long-distance, Laura and Simon still consider her their perfect little girl, who they say has battled against all odds to try and live a normal life
Los Angeles, November 16 -- A rare illness is turning a little British girl into stone. The 5-year-old girl from the UK is suffering from an extremely rare illness that turns the cells in her body to "crystal".
Lillie Sutcliffe from Castleford, West Yorkshire in England is battling a rare condition called Cystinosis, which leads to a build-up of amino acid in the form of crystals, causing the body cells to solidify.
Cystinosis-A rare genetic disorder
Cystinosis is the condition in which an amino acid, cystine accumulates in various organs of the body including the kidney, eyes, liver, muscles, pancreas, brain and white blood cells.
According to the Cystinosis Research Network, the condition primarily affects children. Without specific treatment, kids with this disorder will develop last stage kidney failure at approximately age 9.
Cystinosis is the extremely rare genetic condition, affecting about 2,000 people worldwide.
Lillie’s body turning to stone
Lillie was diagnosed with Cysitinosis in August, 2006, when she was 23 months old. Doctors discovered she had the problem after scanning her eyes and finding crystals, the Daily Mail reported.
The little girl’s parents, mother Laura Milner and father Simon Sutcliffe, were stunned when the doctors told them about their daughter’s illness.
“I had never heard of the condition, so I was a bit shocked to hear what it did,” Laura, an NHS secretary, told the Daily Mail. “It means Lillie's body essentially turns to crystal. They just load up inside her. If it wasn't treated she would turn into stone eventually because it attacks all the cells.”
Although the condition can be partially treated, there is no cure for the condition.
Dependant on salt food and cocktail of drugs
Lillie has the body of a two-year-old and every day she needs a cocktail of drugs --including potassium citrate, sodium chloride and vitamin D-- to avoid the cells in her body from turning to crystal, the Daily Mail reported.
In addition, Lillie must consume a salt-heavy diet to replenish nutrients that she loses through a faulty kidney that fails to clean her blood.
“It's unusual because she doesn't like sweets or anything like that because she craves salt, because she loses so much of it through her kidney. I have to make her salty food to try and help her replace the sodium she needs. If it had gone undiagnosed parts of her body would have turned to crystal,” Laura said.
Brave ‘Crystal’ girl
Although, the disease has stunted Lillie’s growth and disabled her to walk long-distance, Laura and Simon still consider her their perfect little girl, who they say has battled against all odds to try and live a normal life, according to Daily Mail. They believe she has the strength to battle her illness.
“She can't do normal things that other five-year-olds do because she is so small - she's got the body of a two-year-old. She goes to full-time school and is academically no different, she just needs a step to reach things because she's so little,” the newspaper reported Laura as saying. "I am so proud of how she is fighting it."