Mum stands up to bullies covering herself with dots to match her son’s rare condition
A mum is standing up against bullies after her son, suffering from a rare disease and a complex disability, was cruelly mocked by onlookers.
Erez Gaon was born with Congenital Melanocytic Naevus, a rare condition where the body produces excess melanin. As a result, his skin is covered head to toe in dark moles.
Erez’s condition is so severe that he even has moles internally on his spine and brain, which have made him also prone to epileptic seizures controlled by medication.
Only 1 out of 200,000 births, will have GCN, 15 percent of them will include satellites and five additional neurological impact known as NCM(Neuro cotaneouos Melanosis)
At just eight years old, Erez, who also has severe scoliosis, has already endured his fair share of bullying because of his outward appearance.
Mum Ruthi, 45, said: “Last week, a young girl looked at Erez and said something very ugly and started to laugh.
“Her mother started laughing too, like she had just heard a great joke.
“They weren’t thinking about how Erez would feel. I felt like I could strangle her and I wanted to tell her that she should be ashamed, but I was lucky to look at Erez first.
“He looked at me and smiled, letting me know that everything was going to be okay.”
But when Erez was born, he baffled doctors and alarmed his parents.
Ruthi and her husband Yoav, 45, who already had two healthy children Noa, 15, and Asaf, 12, said they had every expectation for a ‘regular baby’ but instead of being happy they were in shock.
Ruthi said: “Everyone was shouting and in a state of panic. I said, ‘Please, can I see my baby?’
“They wrapped him up to cover his body so I could only see his face.
“It was beautiful and I saw some dots, but the doctors said they might just be bruises so I relaxed.”
Four hours later, Ruthi saw her baby naked for the first time. It was a moment that she’d never forget. He was completely covered in dots, with a large dark mole covering the whole of his back.
There was a tumour, too, growing rapidly on his upper left shoulder. Aggressive and malignant, it was removed when Erez was a week old. Then, the seizures started.
Ruthi said: “We were thrown into a black hole and we didn’t know where to start.
“The first year was very hard. He had five surgeries to take off some of the dots and help him breath better. It wasn’t easy.
“But after a year we decided to stop taking him for surgeries and everything started to change for the good.”
Not surprisingly, Erez began to smile more. He became a happier kid and his bubbly personality emerged.
But even as home life got better, friends began to withdraw. The Goans were no longer invited to parties and friendships quickly dwindled.
Yoav said: “People really didn’t know how to react and behave around us , probably out of fear and ignorance
“We needed to figure out how to continue on in our lives with our families and friends.
“I took Erez out everywhere. I didn’t care. It was important for me to answer people’s questions and show other children that he wasn’t contagious.”
But the adjustment didn’t come as easily to Ruthi, who admits that she didn’t feel comfortable with Erez outside of hospital. The constant questions were too tiresome.
Eventually though things got easier and Ruthi slowly began to introduce Erez to the rest of the world. She anticipated the stares, but what she didn’t expect was that he’d be such a social butterfly.
Ruthi said: “He loves to play with the other kids. He has an incredible motivation to be with people and do things socially.
“He’s in third grade and goes to a special needs school, but once a week we send him to a regular school to encourage social inclusion.
“It’s something that we fought for with the Ministry of Education here in Israel. At first they told us it was impossible to do this partially but we wouldn’t accept it.
“Now, Erez can socialise with all types of children so they can all be friends and play together in the garden.”
Most of the neighbourhood children know Erez, but there are still the odd few that don’t know how to approach him.
Even worse, the ones who mock him.
Ruthi said: “Last week, when that girl made a joke about Erez in front of him, I had so much anger.
“I was worried about how he might be feeling, so I sat with him and explained it in a way he could understand.
“I told him no matter what people will say about him, he is the most beautiful boy for me.
“I told him that I love his dots and that I wanted some like he has.”
Before long, Erez was helping his mum paint dots all over her face until she looked just like him.
A few selfies and a lot of laughs later, Ruthi decided to post the photos on Facebook with the small hope that it would reach the mother who laughed at Erez just hours earlier.
The Goans live in a small community, so the chances were high that it would reach most of their neighbours—but what Ruthi had no expectations for her post to go viral.
She said: “I went to pick up our older son Asaf from basketball and left my phone at home.
“After an hour I came back and Yoav told me the post had thousands and thousands of likes and shares.
“I was in total shock.
“People from all over the world were sending me messages and photos of themselves with dots that they had painted on their faces.
“It gave me goose bumps that people had the courage to do this.”
Ruthi’s post, originally uploaded on October 8, has since received 67,000 likes, over 9,000 shares, and more than 5,000 comments from people around the world.
In it, she writes of how hard it is to watch others mock her son, but that Erez’s magical touch reminds her how proud she is to be his mother.
She writes: “it is important to me that people all over the world will know that there is a name to it and it is called Congenital Nevus and satellites…it is not contagious and it is rare. There are brave children and adults who are challenged by it all over the world.
“And to you dear mother, if this post reaches you just know that I choose to forgive you…because of my treasure that teaches me every day how to be a better person.”
Ruthi and Yoav hope that by sharing Erez’s story to remind people to think about their reactions when they see people who look different.
Yoav said: “Although they look different from the outside they are beautiful souls and feelings that just want friends like anybody else.”
In an effort to encourage others to celebrate the differences in others, Yoav and his brother Moshe Gaon have founded yooocan, an online community for people with disabilities and their families to connect and share stories with each other.
Their website is also a place for people to search for assistive devices and other products and services for people living with disabilities that are hard to come by.
Ruthi said: “When Erez hears someone laugh, he laughs. It makes him happy.
“My daughter Noa said something beautiful the first time she saw Erez: “Look at his eyes, he is so cute” she was only 7 at the time. This is my recommendation for everyone out there. Don’t look for the disability, search for the eyes.”