'My six-year-old son lives with tumours, epilepsy and autism. Here's how he's helping other kids.'

Behind the joyful and cute little face of six-year-old Maselino, nicknamed Mase, is a boy who lives with multiple non-cancerous tumours on his brain that need to be monitored for the rest of his life. 

He was born with two tumours on his heart, and though one of them has gone, he then developed one in his eye that now also needs to be monitored. 

These were the realities that were put to his mother Clarissa, within the first few months of his life. 

While you're here, watch what life is like with Autism Spectrum Disorder. Post continues after video.

In fact, doctors first suspected this condition while his mother Clarissa was 36 weeks pregnant, when she was told that he may have his first epileptic seizure when he was three months old. This did indeed happen, with the seizure lasting just over four minutes, with Mase narrowly avoiding brain damage. 

We often hear about the challenges that parents with autistic children face. The incurable condition Mase has, called Tuberous Sclerosis Complex (TSC), means he also has associated autism. In addition, he lives with tumours, epilepsy, is globally delayed and has angiofibromas, which are small, red bumps on the face. Clarissa has felt utterly alone in dealing with a condition so rare that she often has to explain it to some doctors she sees. 

Apart from dealing with the practicalities of caring for a child living with such complications, Clarissa has bottled everything up and has found what she's struggled with the most, is people around her not understanding her son's condition. 

"I've been depressed many times about it, I have felt like I was suffocating, like I was alone. But now I know I'm not and I just hope other people, going through something similar, go to someone - because I didn't." 

She has now found support groups and an Awareness Day for Tuberous Sclerosis. "Sometimes I'd feel guilty about being sad about his condition because I wasn't going through it like Mase was. But I realised having some support helped me be stronger for him. It helped a lot to talk to and meet other families going through the same thing and sharing stories."

Mase can often be mistaken for a perfectly healthy boy, as his tumours are not visible, with two on the brain and one in his eye. The red marks on his face are small, so not visible from afar. Clarissa says she has had people say to her, "Oh, it looks like there is nothing wrong with your son," which hurt her a lot because it undermined all the battles they were fighting.

Image: Supplied.

"Just because he doesn't have a physical disability, and you can't see his tumours, he is going through a lot." 

Mase has to take two medications twice a day for the rest of his life. "We still haven't been able to control his seizures. He could have six a day or one every two weeks, we don’t know what triggers them."

Clarissa says she feels helpless when they happen. Mase also experiences behaviour changes because of his medication. "At the moment, my son's in this phase where's he's lashing out and hurting himself."

It's also been heartbreaking for Clarissa to watch her son being dismissed by other children. "They don't try to talk to him because they can't understand him, because of his speech delay. At a birthday party, he was trying to help other kids get to the top of a jumping castle, but they couldn't understand him, so they just walked away, which broke my heart. When this happens, all I can do is distract and redirect him, I don't want him to feel isolated."

One day, she found a book her son loved, about a bird with one leg. In the book, a little girl thinks the bird can't do anything because of this. But it turns out that she has one leg too and this inspired her to go outside and play with the other kids.

This was the trigger for her to create a simple, easy-to-understand book that her son could relate to, and that was more specific to having a rare medical condition. "It was like a Saturday project with him. I typed up the story, and he drew the pictures." The result is their 24 page paperback book, named, 'Did you know... I was born a TSC hero!'

There was an emotional moment for Clarissa in the process of creating this book with her son. "I said to him, 'Do you want to draw the little boy, and can you put red spots on him too?' He said, 'Oh you want me to make it sick?'" I thought to myself 'I don't want you to view yourself like that.' It was so sad, I cried.

"I explained to him, 'This is a book you can read to other kids, to let them know that it's okay to be different.'" He's still too little to fully understand but when I told him that people could buy our book, he was so happy.

"We are so proud of it. I want to help other kids and families living with rare medical conditions know they're not alone, that there is someone else out there fighting the same battle, that it's okay to be different and they don't need to feel left out." 

She says sharing it with her colleagues, friends and family has helped opened a safe space for her to talk to them about his condition when she needs and has helped them to know how to offer support to her.

Image: Supplied.

Clarissa says she's received great feedback about the book already.

Janice Tietzel and Ryan Wills, parents of two young children, say, "Through the voice and gorgeous illustrations of six-year-old Maselino, the book shows how through acceptance and perspective, a brave young boy emotionally navigates some of life's most difficult and seemingly unfair challenges. His story sets a fantastic example of how challenges can be processed into opportunities for growth and happiness. Clarissa's words convey, what living with TSC is like for her 'hero' son."

Clarissa is looking forward to the impact this book, illustrated by Mase, can have on other families in similar situations. 

Meanwhile, the battles continue for Mase and his family, with Clarissa describing the most recent doctor appointment as confronting. She was advised that surgery may need to be considered for removal of Mase's tumours, with surgery carrying a whole set of risks. 

Mase's story is also a true reminder to avoid judging by exterior, and as quoted from Plato, to "Be kind, for everyone you meet is fighting a hard battle."

'Did you know.... I was born a TSC hero!' is available on Amazon.

Image: Amazon.

Did you know we have a whole family focussed community you can join on Facebook for more discussions like this? Join the Mamamia Family Facebook group and follow  Mamamia Family on Instagram and tell us what #parentinglookslike for you!

Feature Image: Supplied.