Castleford, little girl 5 years old should drink a can of drugs almost every day to prevent his body's cells petrified. Lillie Sutcliffe has a disease that is very strange and rare. Cystine excess body produces substances that makes the cells such as crystalline solid.
The little girl who came from Castleford, England Cysitinosis disease was diagnosed in August 2006 when she was 23 months. But for Laura Milner and Simon Sutcliffe, parents Lillie, her daughter looks like a regular normal girl physically.
Cysitinosis is a very rare disease and can not be cured completely. This disease is hereditary, in which the crystal produced in the body's cells. This disease originated from Lillie suffered kidney failure as a baby.
As a result of kidney failure, the blood can not be filtered and cleaned again by the kidneys. The condition was then trigger overproduction of chemicals cystine, which is an amino acid in the body. And if the body of excess cystine, cells will condense because cystin will join each other and form crystals.
If it were so, kidney problems, thyroid gland, eyes and liver will occur. The body no longer able to clean up piles of crystalline cystin.
The mother knew Lillie disease after an inspection found the crystals in the eyes of Lillie. "If the eyes have started to have the crystal, meaning the whole body can be crystallized. The doctor told me the whole cell can crystallize if it does not take the medicine as soon as possible," Laura said as quoted by Dailymail, Friday (13/11/2009).
Because of his illness was, Lillie could not develop properly, can not walk away and do sports. He also had overshadowed the fear of his petrified if not taking the drug with the right dose.
Lillie is now 5 years old has only 86 cm height, body size usually have a child aged 2 years. "He still looks like an infant, often crying and very little appetite," said Laura.
In contrast to children in general who like sweets, Lillie just do not like sweet but very happy with salt. "Maybe because he lost a lot of salt from the kidneys. As a result, I have to make a salty dish to replace the sodium they need," explained Laura.
Each day, Lillie had to take various doses of drugs, ranging from potassium citrate, sodium chloride, liquid phosphate, vitamin D and many other medications to prevent formation of cystine crystals continue to accumulate.
Dr Kay Tyerman, consultant pediatric neurologist and a handle Cysitinosis Lille said that the disease can only be slowed down and can not be cured permanently. "This is a very rare disease. If it does not take medication as prescribed, Lillie could be blind and petrified. Age life will be shorter," Tyerman said.
"But Lillie Banar really brave and strong boy. I am proud because he is young and courageous fight against illness," added Tyerman.
Now, parents Lillie should really give the right dose of medication on Lillie. "If he is to miss taking medicine, bad things can happen to her. Now, Lillie was like a half-life only. But we never know, maybe one day if he could still survive, there will be a drug that could actually cure him, "said Laura.
