A young boy who was born with a rare life-limiting brain disease and is unable to walk or speak has started injuring himself in “frustration”.
Devoted Arizona parents Gardner say their son, who is two and a half years old, gets more and more desperate from week to week, injuring himself and his friends, biting and pounding his head until he bleeds, bruises and has lumps on his head.
Now they have started a fundraiser to get him the specialized therapies he needs to get the most out of his life.
Arizona lives with a number of brain diseases, including septo-optic dysplasia, which affects only 1 in 10,000 people.
He is unable to stand, walk, speak, or feed himself, and has global developmental delay, sensory processing problems, and growth hormone deficiency.
While parents Deborah, 33, and Adam, 36, of Leigh-on-Sea, Essex, are grateful for the care of his NHS team and specialists, they know it is not enough for Arizona and they cannot go on like this how things are.
The NHS has provided expensive specialty equipment to help Arizona sit up and move around, but Deborah and Adam believe that with the right help and support, he could do more.
They want to give their son, who they say has “magical laughs” and “unforgettable smiles,” the best chance at life and a chance to do what other children do.
Adam, a college teacher, and Deborah, who works from home for the Shelter charity, shared the story Essex Live They hope to offer their son intense, nontraditional therapies that range from 80 to 130 pounds an hour.
A therasuit could give Arizona extra strength to practice sitting, and hydrotherapy could satisfy its sensory needs while regulating its emotions. Music therapy could also help with his communication development.
“I just want to give him the best possible chance in life,” said Deborah. “We have to pay Arizona to do normal things like sitting up and talking.
“He needs very specialized therapy. If it turns out he can’t, at least we’ll know we gave him the best possible chance. It’s about giving Arizona the chance to experience the same things as his colleagues . ” – like going to a pool or joining a musical group.
“He deserves that.”
Deborah’s pregnancy seemed to be going smoothly until her 32-week scan identified potential complications.
She was sent to an urgent MRI which devastatingly revealed that her unborn son had five major brain problems.
In a series of meetings with counselors, neurologists and geneticists, the couple were warned that he could potentially be severely disabled and in need of lifelong care and “low chance of survival”.
At some point they were advised to consider an abortion, but could not bear the thought of losing their son.
After he was born, Arizona spent a week under specialist care before going home.
The couple say it was wonderful and rewarding to live with, but it was also a great challenge.
“Arizona has very significant sensory processing issues so he doesn’t like to be out and about like very noisy group therapies, he just gets upset,” said Deborah.
“He operates at around eight to twelve months, so he does what children would do at that age. Because of global developmental delay, he will always lag behind his physical age. He is also suspected to be autistic.”
Physically, Arizona has found some ways to “compensate” for the inability, Deborah said, digging in his heels to slide around on the mat.
But it is clear that he desperately wants to sit up and speak – and is deeply saddened that he is unable to do so.
“He throws himself forward very hard, like a sit-up, into a sitting position he can’t hold because he doesn’t have the strength, and he falls back and hits his head,” said Deborah.
“He communicates by hurting himself and us. He bites himself so far that his arms are bruised and scabbed. He’s biting his mouth so hard that he has ulcers that upset him even more and it’s a vicious circle.
“My husband and I have a tough future ahead of us. Arizona is under a lot of pressure to take care of – we love him to the end of the world, but it’s a challenge.
“We barely had time to process the trauma before he was born, let alone take the next one. What we went through during pregnancy was really heartbreaking. It was the worst time of my life.
“It’s very complex and there are a lot of big emotions. We are so grateful that he is where he is and he survived and he is wonderful and funny and so determined, but you too mourn for what you wanted for him and for us too.
“The world is not made for kids like Arizona. We just want to give them lots of life experiences.”
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