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How Naomi Allen dealt with her son Braxton's alopecia areata universealis diagnosis



He's only four, but Braxton Allen has already faced more than his fair share of human ignorance.

A viral infection at 12 months old caused him to lose all his hair except his eye lashes.

His Hunter Valley mum Naomi Allen has faced deep despair over the bullying and teasing that's been directed at her son.

This emotion has been so strong, she's decided to do something about it.

Braxton is excited that someone will look like him but he "doesn't want me to lose my hair," Ms Allen, from NSW Hunter Valley, said.

"I really just wanted to make him feel better and that he wasn't different.

"Unfortunately, he has experienced a lot of bullying, especially from adults."

Sometimes little patches of hair grow then fall out, but most of the time he is completely bald.

People have said things like: "Who gave the kid that hideous haircut?"

"He has been called a freak and parents have stopped their kids playing with him. He has also been punched," Naomi said.

She struggles with the "non-stop staring every time we go out in public".

"A little boy at preschool told him he can't come to school anymore because he has no hair. This devastated him."

Braxton simply wants to be included.

Empathy: Naomi Allen with her four-year-old son Braxton at Nobbys beach. Ms Allen will shave her head to help ease her son's pain. Picture: Jonathan Carroll

Empathy: Naomi Allen with her four-year-old son Braxton at Nobbys beach. Ms Allen will shave her head to help ease her son's pain. Picture: Jonathan Carroll

"I can join in whatever I want to," Braxton said, showing his desire to be accepted.

To help reassure him, Ms Allen and her family say: "God only made a few perfect heads and the rest he put hair on".

Or they encourage him to "embrace what makes you different".

But when he does get an insult, he "shuts down and becomes very upset".

"One event at preschool triggered a very emotional response from him. He was devastated when it was pointed out he is different."

Despite the prejudice he's faced, he does get "a lot of beautiful support".

"He has some very special people in his life who build him up and make him feel like he is so amazing. He loves his preschool, which is fantastic and a massive support for him."

Braxton was diagnosed with alopecia areata universealis at 12 months old.

"We were devastated. Your hair is such a huge part of who you are," Ms Allen said.

"Being so young, he never had the chance to have his first haircut. He never got to express what kind of cut or style he wanted."

The condition also means he has no hair inside his nose, causing it to run.

"Dust and pollen really bothers him. The missing hair from his body makes things like clothing feel different against his skin," she said.

Alopecia areata universalis is an autoimmune condition.

The Australia Alopecia Areata Foundation said inflammation develops around the hair roots, which become inactive and shrink.

"However, the cause of this inflammation is not understood," it said.

"It is safe to say that no simple explanation such as deficiency of vitamins or other food, methods of hair care or external injury can be given.

"The cause is not any fungal, bacterial or viral infection and it cannot be transmitted to any other person. Many people say the condition is stress-induced, but there is little consistent scientific proof of this."

I definitely think my little dinosaur Braxton is one of my biggest blessings and it's an honor to be his mum.

Naomi Allen

Braxton started to lose his hair only weeks after contracting hand, foot and mouth disease.

"He got it very bad with really high temperatures," Ms Allen said.

"The infection went to his brain, causing brain damage and shocking his body into having alopecia."

Since then, she said the family had faced "a tough road" and "a world of problems".

"He lost all speech, he became completely withdrawn and non-affectionate. He struggled with his emotions," she said.

"He couldn't even make sounds – he was mute apart from crying."

The little boy she knew and loved in the first 12 months of his life was gone.

"He wouldn't let us hug him, he became very uncomfortable with more than a few people around," she said. "It was almost 24 months of complete silence from my little boy.

"He couldn't even ask for a drink of water. Everything was just pure frustration for him because he knew what he wanted but couldn't express himself."

Braxton began to learn sign language and underwent speech therapy and occupational therapy.

"Nothing was working," Ms Allen said. "After so long of nothing changing, we decided to try our own way with pediatric support."

Braxton started doing music therapy at home and enrolled in soccer and dance programs.

These things made a massive difference.

"In August 2017, he started babbling and saying a few words," she said.

In early 2018, its development dramatically improved.

"He is still a little behind but he is smashing so many things we thought he would never do," she said.

She said Braxton was the "happiest, kindest, loving little boy you could ever hope for".

"He loves to learn and blows me away with how smart he is and the things he's absorbed all those years."

Ms Allen finds it hard when ignorant people put her son down for his appearance.

But she said the experience had changed her outlook on life.

I see life in a whole new light. I appreciate things that really matter and try to find happiness in everything.

Naomi Allen

"I definitely think my little dinosaur Braxton is one of my biggest blessings and it's an honor to be his mum."

She practices kindness in her own life as much as possible, given that "you don't know what struggles people are having".

She will always hold hope for a cure.

"But if there is no cure, we can all hope for kindness."

Ms Allen will shave her head on October 30.

This story One mum's selfless love for her bullied 4yo
                                    first appeared on Newcastle Herald.


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