Knottingley parents plan big day out to help pay £900 a month bills for ‘smiley’ tot Lennie’s cerebral palsy treatment

Lennie Clay, 16 months, was diagnosed with a brain injury called periventricular leukomalacia (PVL) when he was four weeks old and most recently, he has been diagnosed with spastic cerebral palsy which impacts his movement.

Parents Candice and William, from Manor Garth in Kellington, hope that getting additional therapy to improve his condition will help him to live a more fulfilling life – but it costs them up to £900 a month.

Social worker Candice said: “It's upsetting and we know he will have a hard life but he's a beautiful little boy. He’s is very smiley despite having the brain injury

“He wants to be like his peers. He watches other children toddling about and you can see he wants to do it as well but his brain and muscles don't work that way.

“He is a happy and content little boy but we want to support him the best we can.”

The couple are running a fun day on Sunday, August 27 at Knottingley RUFC on Marsh Lane to raise money for Lennie’s therapy and awareness of the condition.

It will feature a game of rugby, fun fair, bouncy castles, food, cakestalls, face painting, hair braiding, and entertainment including a singer and a DJ.

There will also be a selection of raffle prizes to will be drawn on the day, including signed shirts from Castleford Tigers players.

The event is open to everyone and people are advised to bring a blanket to sit on.

Candice said she understood the NHS was stretched but that Lennie needed more treatment that was offered.

She said and the frequency of appointments with staff was too little and time was of the essence in his recovery.

She said: “We as parents feel frustrated he is not getting the support he ought to.

"It's been really difficult. It's been quite hard on me and my husband's mental health.

"We have to be his parents as well as his physiotherapist and speech therapist, while going to work as well.

"We can see development with the private therapy he is getting but it’s a very slow process.”

Talib Yaseen, chief nursing officer at the trust, said “In line with NICE guidance, our Trust’s Therapy Team offers a holistic, multidisciplinary approach, based on clinical need, to support patient care.

“This guidance recommends access to physiotherapy, occupational therapy and speech and language therapy for children and young people with cerebral palsy, tailored to their individual needs, and aimed at specific goals to support skill development, function, and ability to participate in everyday activities.

“Our Therapy Team offers intervention groups, hydrotherapy, specialist equipment assessment and support, orthotic management, treatment programmes and training.

"Promoting a 24-hour postural management strategy, our service uses targeted interventions, training to parents, carers and educational staff to support daily postural activities, and regular reviews of goals and function.

“We can confirm that Lennie has been offered and continues to receive all services we offer as part of our standard offer as a local children’s therapy team.”

Visit www.justgiving.com/crowdfunding/helplennie to donate.