May is national Prader-Willi Syndrome Awareness Month. Health Editor Barry Nelson meets a Darlington family who are getting used to life with a PWS child

NINETEEN-month-old Lily likes nothing better than to roll around the floor on her side, first one way then the other. She can keep this up for ages, enjoying the sheer pleasure of movement as her world spins round and round.

But unlike twin sister Candra, Lily can’t walk a single step or speak a single word. In fact, she can only just sit up on her own and needs to be watched in case she flops forwards or backwards.

Lily, who lives with her adoring parents, Chris and Tracy Redshaw, Candra and sixyear- old brother, Harry, on the Red Hall estate, in Darlington, has Prader-Willi Syndrome, a little known inherited medical condition which affects about one in 15,000 births in the UK.

“She was only the second case the doctors had seen for 15 years,” says Tracy. “We think she is the only one with PWS in Darlington.”

According to the website of the PWSA, the main charity which supports families and children with this condition, it is important that parents should not blame themselves in any way for their child’s condition. Chromosomes come in pairs and PWS is simply due to the baby failing to receive active paternal genes from a specific section of one chromosome 15, it explains.

Having gone into all of this in great detail, Lily’s parents know that in their daughter’s case she is suffering from a “deletion”, which means part of the chromosome 15 inherited from her father is missing.

Lily did not have an ideal start, with her mother having to have an emergency Caesarean delivery at Darlington Memorial Hospital when her twins were six weeks premature.

“Tracy had to have an emergency operation because they were not picking up a heartbeat,” recalls Chris.

Lily’s doting grandmother, Anne, says there was a difference between the two little girls right from the start. “Lily seemed really lifeless at first. It was Candra who was the one who was full of beans,” she says.

Lily needed help with her breathing and was transferred to the James Cook Hospital, in Middlesbrough, where she was put on a ventilator.

Initially the doctors were not sure what was wrong, but two weeks after Lily was born, the results of genetic tests confirmed that the little girl had PWS.

“It wasn’t a great shock because we knew there was something wrong,” says Chris, who remembers that the first thing he asked was whether his daughter would have a reduced lifespan. “That was all we wanted to know.

They told us that she should have a full life and that was good enough for us.”

The couple are remarkably philosophical about the implications of their daughter’s diagnosis, but when you discover that they lost their 14-year-old son Liam to leukaemia four years ago, it helps to explain their determination to enjoy every minute of Lily’s life.

Chris and Tracy are fully aware that they may encounter challenging learning and emotional behaviour as Lily grows up. The syndrome weakens the muscles and can also lead to motor development delays and a short stature.

At this stage the main challenge is ensuring Lily gets all the calories she needs, but they know that when she gets older, like other PWS youngsters, Lily is likely to develop an insatiable appetite. “We have been told that a child with PWS could sit down and eat a big lunch and then eat it all over again…and again,” says her mother.

According to the PWSA, this aspect of the syndrome is particularly troublesome for parents and potentially dangerous, because of the risk of obesity. “To date, no effective medications have been found to regulate appetite,”

says their website. “Inability to control food intake is often the biggest obstacle keeping those with PWS from living independently.”

TO prepare for that eventuality, the couple have already constructed a secure food store in their home. “People with the syndrome have been known to take food out of bins or try to eat frozen food. You have to be very careful,” says Chris.

The couple have found the PWSA very supportive.

A representative travelled up to their home from the London area shortly after Lily was diagnosed and they have also had moraleboosting visits from other families with PWS children, including a family from Wales.

They are hoping that efforts to raise awareness of PWS will help more people understand some of the challenges PWS parents and children go through.

The NHS Choices website says children with PWS tend to take longer to reach important developmental milestones. Although most PWS children can attend mainstream school, they may find some activities challenging.

On the other hand, NHS Choices point out that PWS children tend to be good at solving puzzles, such as jigsaws.

But as Lily poses for photographs, her gran sums up the love her family feels for her. “She is just adorable,” she says.

  • For more information, visit pwsa.co.uk or ring the helpline 01332-365676.