A CASTLEFORD girl with a rare genetic disorder could eat for the first time if she gets a new kidney.
Lillie Sutcliffe, seven, has to be fed through a stomach tube, and is the size of a toddler due to the disorder cystinosis, where amino acid cystine accumulates in her cells, causing crystals to form and damaging her internal organs.
Doctors hope a new kidney could change Lillie’s life, enabling her to eat normally, and prompting her to grow.
The Express first reported Lillie’s condition in 2009, when her family were raising money to take her to Disneyland. Now they are trying to raise awareness for the organ donor register, as well as cash for charities The Kidney Foundation and the Cystinosis Foundation.
Her mum Laura Milner, 32, of Wood Lane, Whitwood, said: “Lillie’s condition has deteriorated quite rapidly since January and it’s just got to the point where they have had to make the decision that she is listed for a transplant.
“It’s not a cure, but it will give her that lease of life and a chance of leading a normal life for at least 12 years, or however long the kidney lasts.
“It should hopefully encourage her to start eating orally and that will help her grow. She will never catch up, but hopefully she will start putting weight on and growing at a regular pace.”
Early tests have found Lillie’s father Simon Sutcliffe, 32, is a blood match and he is currently being tested to see if he is a tissue match, which would enable him to donate a kidney.
Laura added: “It takes about four or five months to go through that process, so Lillie is on the register for a deceased donor, in case one comes up before then.
“At the moment Lillie isn’t on dialysis, and hopefully we will get a kidney before she needs that.”
Currently Lillie has weekly hospital appointments to monitor and manage her condition, and she has to be fed through a stomach tube.
She was diagnosed with cystinosis at 22 months. As well as kidney problems, the condition has affected Lillie’s eyes, and she is likely to become diabetic when she is older.
Cystine is made by cells during natural metabolism and normally leaves the cell, however the condition causes it to build up to 100 times the normal level, forming crystals that destroy the cell. It commonly affects the eyes, kidneys, muscles, pancreas and brain.
Laura said: “We raised money to take Lillie to Disneyland, but we’ve had to put it on hold, because she’s so small – just 92cm – that she’s too small for most of the rides.”
The awareness and fundraising night takes place on Saturday June 30 at Townville WMC on Poplar Avenue, at 7.30pm. There will be local acts performing, raffles and an auction, with prizes donated by local businesses. Admission is £2.
Laura added: “It’s more about getting as many people in there to get them to sign up to be an organ donor, but also blood donor, tissue donor, there’s loads of different ways you can help.”