LITTLE Precious Swatton battles a range of illnesses every day.

People with her condition are not expected to live long into adulthood, and so the three-year-old from Oakley is Precious by nature as well as name.

Her mum Gemma said Precious was always smiling, and was a "bubbly and happy" little girl, despite having holoprosencephaly, which means her forebrain failed to develop when she was an embryo, leaving her severely physically and mentally underdeveloped.

Her mum said: "It resulted in a salt-based form of diabetes and I have to watch she doesn't get dehydrated.

"She has a growth hormone deficiency, and cortisol deficiency, which means she doesn't react normally to stress on her body."

Precious also has cerebral palsy and asthma.

Gemma has paid tribute to the James Hopkins Trust, which is celebrating having spent £5 million locally since it was founded 22 years ago, and provides support to Precious and her family.

Precious' condition was diagnosed after doctors noticed she was not feeding properly after birth. It came as a surprise as the only problem revealed in the 20-week pregnancy scan was that Precious had a cleft lip and pallet.

Precious is able to communicate with her eyes, smiling and laughing. She also makes a few hand movements.

"Doctors can't put an age on how long Precious might live because it's such a new condition," said Gemma.

"They don't have much medical evidence to base it on.

"The condition is only 30 years old genetically and the oldest surviving person is 21."

Gemma hopes to send her daughter's MRI scans to specialists in America to gain more vital information.

Throughout it all, she said help provided by a nurse from the James Hopkins Trust had been invaluable.

She was referred to the charity, based in Barnwood, Gloucester, shortly after Precious' birth and a nurse funded by the charity provides respite support for up to four hours a week.

Gemma says: "Our nurse Michelle Jose is brilliant. She also works full-time as a nurse at Gloucestershire Royal. It has been such a comfort to me to have someone who I can go to and talk about what Precious is going through – particularly when she is ill, which is frequently."

Vance and Heather Hopkins founded the charity in 1989 after their two-year-old disabled son James died.

The charity has a group of loyal supporters helping with fundraising. The majority are families who have benefited from the trust's services.

Now they want to raise money for an overnight respite shelter in the county.

Vance said: "Recently a garden fete, organised entirely by our family members, raised an amazing £4,000. There is so much dedication but we see a similar level of support from local people who don't necessarily benefit directly from the work we do and that's great.

"Reaching £5 million is an achievement for any small charity but when it has been raised locally and spent locally it feels even more significant."

OPINION, P8