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Parents raise awareness about hospice supporting their disabled son

A J Mashonganyika
A J Mashonganyika Image credit: leicestermercury.co.uk

AJ never had the opportunity to meet his twin brother, his sibling died in the womb and he was born with severe brain damage.

Despite surviving his birth AJ was not expected to live past the age of two. He’s now 17 and has two siblings Jah-Ellah, 14, and Samuel 11.

His mum Linda Mashonganyika told Leicester Live the difficult time herself and husband Andrew went through when they lost one of their babies with the fear of losing the other.

She said: “It was really difficult. At 23, I was so young and we didn’t understand a lot of things.

“We had lost a child and there were no guarantees the other one would make it through birth and if his heart stopped, he wouldn’t be resuscitated.

“They said his quality of life wouldn’t be good and he would have severe disabilities.”

The teenager is unable to sit unaided, control his head and is fed through a tube, he also has vision loss, but despite his health conditions Linda and Andrew call him their miracle son.

Linda, from Wigston, said: “We were told he would never be able to smile but he has the most amazing smile - it is a gorgeous smile and if you are having a bad day, that smile changes everything, it is just captivating.

“AJ is registered blind but they are not sure if it just takes his brain longer to register things.

“He definitely shows signs of recognising things. He knows your voice.”

The parents receive support the Rainbows children’s hospice, based in Loughborough, over the past three years.

Linda said: “They all just love swimming in the hydrotherapy pool. Music therapy is wonderful and the multisensory room is incredible, we all just love it in there.

“Rainbows has also helped us to go on holiday without AJ while knowing that he is also having a holiday too. We can go away and not feel bad about leaving him.”

Despite AJ proving doctors wrong, living fifteen more years than expected, his kidneys are deteriorating, he needs a transplant as soon as possible in order to save his life.

Linda said: “We try to do the most we can while we have got him.

“We never know when the day will come and we just try to normalise everything and live each day as if it is his last.”

The family are urging people to support their local hospice, which is currently running a Superdraw so they stay in operation.

Linda explained: “For years we did everything for ourselves with no help.

“Rainbows opened a different world for us.

“The first time we stayed as a family and it really was like a holiday - it was magical.

“Experts say AJ doesn’t understand but when we tell him he is going to Rainbows, you should see the excitement on his face - it lights up and he loves it.

“When we first found out about Rainbows, it was a fear of the unknown for us. We thought a hospice is a place where you go to die. But it is about so much more, the support we get is incredible.

“And it is not just AJ who is cared for - Jah-Ellah and Samuel also benefit.

“They go to the sibling group and it is so important for them to know they aren’t alone, that there are other children out there who have poorly brothers or sisters.

“They often help with the care of AJ because they love their brother so much and want to be involved with him. But at Rainbows, they can be children.”

For more information on Rainbows hospice visit their website.