Parents' tributes to 'remarkable' 10-year-old Phoebe

PUBLISHED: 07:00 17 September 2012 | UPDATED: 10:43 17 September 2012

Phoebe Willis with dad Julian

Phoebe Willis with dad Julian

Julian Willis

THE parents of a 10-year-old girl who died having suffered from a rare genetic condition have paid tribute to their 'remarkable child'.

Phoebe Willis, who had the condition cystinosis, died on August 26, only weeks after going to the Olympic Games with her family.

The Locking Primary School pupil was taken to Weston General Hospital on the morning of August 25 after her parents became concerned about her health. She died at Bristol Children’s Hospital at 9.40pm the following day.

Dad Julian Willis, aged 41, who gave up work to care for his daughter, said: “She was a very active young lady and the apple of our eye. She was full of life.”

Mum, Heather Willis, added: “You’re not supposed to bury your children.

“She was our life – if I didn’t have any other children I’d probably just curl up in a little ball and die, but I can’t because I’ve to go on for my son [13-year-old Broadoak student Nathan].”

Cystinosis causes an amino acid called cystine, which is usually carried out of the body, to accumulate in cells.

It then causes crystals to develop, which eventually destroy the cells. Phoebe’s parents discovered she had the condition, which causes damage to the kidneys, eyes, and other major organs, when she was just nine months old.

Mr Willis said: “She stopped eating and she was drinking a lot of fluid. We had a blood sample sent off to Great Ormond Street Hospital [in London] and that’s how we found out that she had cystinosis.”

She needed up to 50 syringes a day for feeding and medication to keep the condition at bay, while she also had overnight sustenance provided through a feeding tube, administered at the family home in Lime Close, Locking.

Mr Willis left his job at the Royal Mail to become a full-time carer for his daughter in March 2011.

He said: “It was a 24/7 job with her but if you saw her you would think she was like any other 10-year-old, running around and doing things.”

During the summer she went on two scout camps with her group, the 1st Locking Scouts, before going to the Olympics in London with her family. A keen air-rifle shooter and archer, she saw eventual gold medal winner Peter Wilson in the qualifying rounds of the shooting.

Her father, himself an assistant scout leader at 2nd Worle Scouts, added: “We never smothered her in cotton wool, she was a brilliant little girl. She was a remarkable child.”

A service celebrating Phoebe’s life will be held at St Augustine’s Church in Lychgate Park, Locking, at 2pm on September 22.

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