AJ's story

AJ's story at Rainbows Hospice

When Linda and Andrew discovered they were expecting twins, they were over the moon. 
But tragically, at 32 weeks pregnant, they were told one of the twins had died and Linda had to deliver both babies. Fortunately, the other twin, AJ, survived but he had severe brain damage. 

“It was really difficult and at 23, I was so young and we didn’t understand a lot of things,” said Linda. “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.

“We were willing to take that chance. We knew there was a reason he didn’t die in the first place and we wanted to give him every chance to survive.”

Linda and Andrew were told AJ wouldn’t live past the age of two but he is now 16. Being born with very small kidneys, AJ has chronic kidney disease. Sadly, this is in the final stages and nothing can be done to delay the process as his body will reject a transplant. 

Life has been difficult for the family, who also have Jah-Ella (13) and 10-year-old Samuel. AJ is unable to sit and has no head control. He is in a wheelchair and fed through a tube. They were referred to Rainbows last year.

“For 15 years we have done everything for ourselves with no help,” said Linda, who is a nurse. “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. They 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-Ella 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. It is a relief for them to know that it is normal and to make special friends with special connections. 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 and are not in that caring role.
“They all just love swimming in the Hydrotherapy Pool, Music Therapy is wonderful and the Multi-Sensory 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.”

Linda and Andrew describe their son as their “miracle baby”. “We were told that 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,” said Linda. “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. 

“As well as Rainbows, what has helped us get through everything is our faith. We are Christians and we believe AJ is here for a reason. He has already lived for longer than anyone predicted. 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.

“One of the challenges we faced with raising a very special child was that strange feeling of being alone. Even though we had very supportive friends and family they had no idea what a day in our life was like.”

Linda adds: “AJ has taught us patience and made us realise the true meaning of love. 
Our special child has taught us that happiness can be found in the simplest things. We have learnt to celebrate each smile, each sound and each intended or unintended movement.”
 

Help young people like AJ

Read more of our families stories