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Lenny’s Story

Lenny was just 13 months old when he was diagnosed with cerebral palsy (a lifelong condition that affects muscle control and movement). Like many children with cerebral palsy Lenny’s mum and dad had thought about his future and what treatments would be available to him.

When Lenny was 2½ years old his parents spoke to a surgeon in the U.S. about a procedure called Selective Dorsal Rhizotomy (SDR). This procedure reduces lower limb spasticity (muscle stiffness) which is commonly a problem in children with cerebral palsy and as a result allows greater movement in the legs, ankles and feet. However, at the time they were concerned about the potential side effects and having to fly over to America to have the procedure done.

In 2015 Lenny and his family met with another surgeon in London to discuss the SDR procedure but, due to the lengthy waiting times on the NHS, they were recommended to contact The Portland Hospital by Lenny’s physiotherapist Chris Smith at KidsPhysioWorks.

Lenny’s parents called The Portland Hospital, discussed the procedure and arranged a meeting with the surgeon who would be performing the surgery, Mr Kristian Aquilina, a paediatric neurosurgeon at The Portland Hospital.

Lenny and his parents visited the hospital in July 2015 to meet Mr Aquilina and to have an assessment. During the assessment Lenny’s parents were able to ask detailed questions about the procedure and recovery times.

“We felt at ease; Mr Aquilina is known in the cerebral palsy community. We asked all the questions we could and left feeling informed and understood the procedure even more,” said Sarah, Lenny’s mum.

The team agreed during the appointment that Lenny was appropriate for surgery.

Matt, Lenny’s dad, said, “After hearing that Lenny had been approved, we were in shock, we hadn’t expected to hear back so soon! We were so happy, and discussed it as a family, we have another son and wanted to make sure our decision would benefit everyone.”

A date for surgery was agreed and Lenny’s family then began fundraising using a great slogan ‘Walk like his friends’. Lenny’s friends, family and the local community got involved and within a few months were able to raise all the money.

As Lenny’s surgery date approached Sarah was feeling hesitant about the procedure. She spoke with Mr Aquilina again and the anaesthesiologist, who explained the operation again to her and put her mind at ease.

“We were really happy that Mr Aquilina took the time to speak to me about the procedure. As parents, we were obviously worrying, but speaking to him again helped us to feel more comfortable about the surgery.” said Sarah.

On the day before the surgery, Lenny and his family were met by one of the health play specialists at The Portland Hospital. They talked Lenny through the steps before surgery, explaining what all the different pieces of equipment were and what they did.

“When I was on the bed, the doctor said to me to smell the gas to make me fall asleep” said Lenny.

Sarah said, “He was out like a light!”

While Lenny was in theatre his mum and dad waited in his hospital room, and as soon as the surgery was complete Mr Aquilina let them know all had gone well.

Lenny spent a night in the Paediatric Intensive Care Unit and he was then moved to the paediatric ward.

Lenny’s mum and dad were so pleased with the care he received during his stay there.

“The staff were beyond supportive, any little thing Lenny needed they were there. If we needed a few minutes to go out and call relatives or to pop out, there would always be someone with him. We would highly recommend the SDR surgery at The Portland Hospital. Our query about the surgery was answered in record time and being approved was incredibly quick too. We want Lenny to be able to play with his friends and to be independent as he gets older; the improvements that we can already see in just a few months are amazing.”

Lenny is continuing his physiotherapy at home with KidsPhysioWorks and comes into The Portland Hospital to meet with physiotherapists too. He is progressing well and looks forward to being a lot more mobile than he has been in the past.

Mr Aquilina, Lenny’s surgeon, is delighted with his progress too. “Lenny continues to make excellent progress. His spasticity has gone, he is getting stronger, and his walking is continually improving”.

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