A baby boy born with a rare life-limiting brain disease who was unable to walk or speak began to injure himself in “frustration.”
Dedicated Arizona Gardner parents say their two-and-a-half-year-old son grows more anxious every week and begins to injure and injure himself, biting and bumping his head to the point where he is ends up with bleeding, bruising and bumps on his lead.
Now, they’ve set up a fundraiser to provide him with the specialized therapies he needs to help him live life to the fullest.
Arizona lives with a number of brain disorders, including septo-optic dysplasia, which affects only 1 in 10,000 people.
He is unable to sit, stand, walk, speak, or eat and has overall 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 her team and NHS specialists, they know it’s not enough for the Arizona and they can’t go on like this.
The NHS has provided expensive specialist equipment that helps Arizona sit and move, but Deborah and Adam are confident that more could be done with the right help and support.
They desperately want to give their son, who they say has a “magical laugh” and an “unforgettable smile”, the best chance at life and a chance to do what other children do.
Adam, a university professor, and Deborah, who works from home for the Shelter charity, said Essex Live they hope to offer their son intensive, non-traditional therapy ranging from £ 80 to £ 130 an hour.
A Therasuit could give Arizona extra strength to train seated, and hydrotherapy could help meet her sensory needs while regulating her emotions. Music therapy could also help him develop his communication.
“I just want to give her the best possible chance in life,” Deborah said. “We have to pay for Arizona to do normal things like sit down and talk.
“He needs very specialized therapy. If it turns out that he can’t do it, then we’ll at least know we’ve given him the best possible chance. It’s about giving the Arizona a chance to experience the same things as her peers – like going to the pool or joining a band.
“He deserves this.”
Deborah’s pregnancy appeared to be going smoothly until her 32-week CT scan identified possible complications.
She was sent for an urgent MRI which devastatingly revealed that her unborn son had five major problems with his brain.
In a series of meetings with consultants, neurologists and geneticists, the couple were warned that they could be significantly disabled and need lifelong care as well as have a “low chance of survival.”
At one point, they were advised to consider terminating the pregnancy, but could not bear the thought of losing their son.
After his birth, Arizona spent a week in specialist care before returning home.
The couple say living with him has been wonderful and rewarding, but it has also been extremely difficult.
“Arizona has some really big sensory processing issues so they don’t like being out there like very loud group therapy, they’re just upset,” Deborah said.
“He operates around eight to 12 months, so he does what children of that age would do. Due to the overall developmental delay, he will always be late … of his physical age. He is also suspected of having autism. . “
Physically, Arizona has found ways to “compensate” for its inability to walk, Deborah said, by digging her heels around the mat.
But it is clear that he desperately wants to sit down and talk – and becomes deeply distressed that he cannot do so.
“He throws himself forward very violently like a sitting position that he can’t hold because he doesn’t have the strength to do so and he falls back and bangs his head,” Deborah said.
“The way he communicates is by hurting himself and hurting us. He bites himself to the point that his arms are bruised and scabbed. He bites the inside of his mouth so much that he has bruises. ulcers which upset him more and it is a vicious circle.
“My husband and I have a tough future ahead of us. It’s a big pressure to take care of Arizona – we love it to the ends of the earth but it’s a challenge.
“We barely had time to deal with the trauma that came before she was born let alone the next thing. What we went through during the pregnancy was really heartbreaking. It was the worst time of my life.
“It’s very complex and there are a lot of great emotions. We’re so thankful that he’s where he is and he’s survived and he’s wonderful and funny and so determined but also you cry what you wanted for him. and also for us.
“The world isn’t for kids like Arizona. All we want to do is give it lots of life experiences.”
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