The family of a young girl with a rare genetic disorder are trying to raise funds to help research her incurable disease.

Ellie Pond is one of just 150 people in the UK with cystinosis(cor.), being diagnosed just after her first birthday.

Even at just 18 months old her parents have to give her medicine up to 13 times a day, waking her every night to keep on top of the illness.

The smiling toddler remains undaunted, and loves playing with her Disney-themed football.

Ellie cannot break down an amino acid leaving her with tiny crystals forming in her cells. These crystals damage organs including her brain, liver and kidneys.

Her mother Kat Newman said she will almost certainly need a kidney transplant by the time she is 20.

“All we can do is slow down the accumulation of those crystals,” the 36-year-old said.

“The condition means she doesn’t grow as quick as other children. She is nearly 19 months old and is just about to grow into size nine to 12 month clothes but she’s growing normally in every other way.

“On her first birthday she came down with Hives and we took her to the doctors. That’s when we found out what was wrong.

“Years ago people with that diagnoses would die when they were 10, now they are hitting their 30s and 40s.”

Ellie will soon have to start taking eyedrops to stop the crystals forming in her eyes.

Kat and her partner Andy Pond both carry the gene responsible for Ellie’s condition but did not discover this until Ellie was diagnosed. Her non-identical twin sister Molly does not suffer from cystinosis.

Ellie has to travel nearly 50 miles to Southampton for treatment.

Now the Calcot family are hosting an auction to try and raise funds for the Cystinosis Foundation UK.

“Because of how rare the condition is - only 2,000 people in the world have been diagnosed with cystinosis - any research is paid for by fundraising, there’s no central funding,” Kat explained.

“The auction was my friend Hannah’s idea. I met her through a toddler group and she wanted to do something to help.”

Companies including Nuffield Health who are offering 12 day passes for their Green Park facility.

Other prizes including Rayban sunglasses worth £100 have already been given to the campaign but more donations and welcomed.

Click here to find out how you can help Ellie.