Mum of Leeds girl locked in a body that doesn't work in plea over charity that helped her take first steps

Four year old Tilly West, who suffers from Rett Syndrome, cannot stand upright or take a step at her home in Guiseley without the £3,500 walker bought by the 50 year old PhysCap charity.

PhysCap faces an uncertain future after the majority of its fundraising events in 2020 were cancelled due to the Covid pandemic.

PhysCap is calling on communities and businesses across Leeds to donate and enable it to continue to help families.

Tilly's mum Dolores Cowburn said: "For a child rendered helpless by a devastating condition, Physcap has given her the gift of doing something for herself.

"Her face lights up because she can stand with the other boys and girls and do what they are doing. We take being upright for granted, Tilly can't."

"Until you have a child with complex needs and realise what they need, you don't understand how vital charities like PhysCap are - they are a lifeline for parents."

Tilly has Rett Syndrome, a rare genetic condition that has robbed her of use of her hands, legs, arms and voice.

The condition will get worse as Tilly gets older and her devastated parents have been told she will need lifelong 24-hour care and may die young.

She also suffers from scoliosis, which causes a curvature of the spine.

Miss Cowburn said the NHS provided one of the wakers for Tilly to us at her nursery school in Otley.

But the equipment is too big to transport in a car so Tilly would not be able to stand upright at home and play with her five-year-old sister Thea without the walker bought by PhysCap.

Miss Cowburn said PhysCap also bought Tilly a £2,500 specialised car seat, which enables her to be able to go on longer journeys with her family.

Miss Cowburn said: "NHS therapists we have dealt with have always referred us to PhysCap if we have needed equipment.

"Without the walker Tilly wouldn't be upright and taking steps at home. Without the car seat we wouldn't go on long car journeys because Tilly couldn't cope.

"As a parent you want the absolute best for your children.

"When you are faced with a devastating diagnosis like Tilly's, the last thing you want to think about is how you cannot afford the equipment she needs because it is so expensive.

"PhysCap just takes that worry and that stress away.

"You face so many worries on a daily basis when you have got a child with a life limiting condition, for someone to lift that big black cloud and say 'here you go we will help' so she has got the quality of life she deserves is priceless.

"For that to be under threat makes me feel really sad, not only for me but for other parents in the future who might not realise they need them now."

PhysCap is a volunteer-led charity set up in 1973 to support physically and mentally disabled children across Yorkshire.

It has raised more than £1.7m to help local children and their families living with a disability.

In 2019 alone, PhysCap raised more than £90,000 which funded 78 families across the Yorkshire region and a further 200 children in supported schools.

The charity, which is led by Chairman Daniel Gray and a team of dedicated volunteers, donates 100 per cent of all proceeds raised through funding initiatives directly to children in need of their support.

Mr Gray said: “The last nine months of the pandemic, has clearly hindered everything that we do.

"We haven’t been able to visit families who need our help due to the multiple lockdowns and largely due to the fact that a lot of the families and children we help come under the extremely vulnerable category and have been shielding.

“We also haven’t been in a position to fundraise, as all of our events historically have been interacting with large groups of people.”

The charity was also faced with the hurdle during the first lockdown that all of the manufacturers where much of the equipment is sourced from were closed.

Mr Gray said: “This ultimately meant that even if we could have supported families requests, they wouldn’t have got the equipment, so for a number of months we had to put out a statement on our website apologising to families essentially turning them away at that moment in time. Something we have never had to do in our 50 year existence.

“The funding application requests are coming in all the time and we are actively spending money again.

"The problem we still face however is that until we are in a position to properly fundraise, the money spent on helping these families will far outweigh the money coming in so we remain very cautious as a committee to our outgoing expenditure.”

For more information and to donate, go to: www.justgiving.com/campaign/festivephyscap