Aash Jai-Evans is not yet five years old but he has already experienced more pain than most of us would in a lifetime.
At the age of 15 months, Aash from Shocklach was diagnosed with diplegic cerebral palsy affecting the lower half of his body. The condition left Aash unable to sit or stand unaided without a frame, in constant pain and having to take 24-hour medication.
However, the little boy’s saviour has been the intensive therapy and physio he receives from North-West based charity Stick n Step, where he attends twice a week, and since last September, Aash has made some huge achievements.
Unlike before, he is now able to stand up in his standing frame on wheels for more than 40 minutes at a time, sit on a chair with good balance, and sit cross-legged for a short period of time the first time ever.
And last month, with the help of his frame, he even managed to complete the 15-mile Wirral Coastal walk which raised £370 for Stick n Step. Over the last six months, the four-year-old has even learned to swim unaided and play games on high knees, despite it often still being a struggle to put his shoes on.
Yet as thrilled as Aash’s parents Shaileena and Mark are is at the progress their son has made, the most exciting news came earlier this week when doctors told her that Aash is now ready to undergo a Selective Dorsal Rhizotomy (SDR) operation, a risk and complex procedure which will mean Aash is finally pain-free for the first time ever, and promises a huge improvement in his quality of life.
The surgery, which is performed to reduce spasticity and improve function and walking, will increase the range of motion and improve body positioning.
Hope for improvement
Shaileena told The Chronicle: “When we attended last week’s hospital appointment we were just expecting another referral for botox in Aash’s legs. However, his consultant said Aash was now ready for the operation that will help make him as independent as possible to give him the quality of life he needs and deserves.”
“Well, the doctor just mentioning the words SDR made both me and Mark break down. We couldn’t actually believe this is going to happen, as previously at an appointment earlier in the year, Aash wasn’t strong enough and the plans for the operation were put back, which completely broke our hearts, so we went into this appointment not expecting any talks of the operation.
“Then, as we assumed it would all happen next year or even the year after that, we were shocked when the consultant advised will meet the assessment team at Alder Hey in the next few weeks so the operation can be done this year at Alder Hey. It completely blew us away!”
Shaileena, who admitted going through a box of tissues after the emotional appointment, said that her next priority is starting to fundraise for the physiotherapy Aash will need after the operation.
“We need to raise approximately £20,000 so if there is anyone out there who is willing and able to sponsor or donate, please get in touch because every little helps,” she said.
“We are so delighted that in September Aash will be starting mainstream school at Shocklach Oviatt Primary School, a fantastic little school with lots of space for him to get about in his walker and standing frame.
New start at school
“We feel lucky Aash is able to attend, as not only will be included in everything the other children do, he’ll also get the best education too - we couldn’t ask for any more for him.
“He continues to smile and is such a happy and loving boy, regardless of the pain he’s in every day,” she said. “He wakes two or three times a night ins severe pain with muscle spasms but he remains such a smiling, sociable boy who loves interacting with everyone he meets.”
If you’re interested in donating, email Shaileena on shaileenaramoutar@yahoo.co.uk
