Cape Town - Seventeen-year-old Jarred Bougaardt has shown the true meaning of resilience by remaining humble, kind, loving, soft and happy while living with a rare condition.
At the age of three months, Jarred was diagnosed with blindness. A few years later, his parents, Jade and Darren, learnt through an MRI scan that he was also severely autistic and non-verbal because of a very rare condition called septo-optic dysplasia.
The rare congenital malformation syndrome includes the underdevelopment of the optic nerve, pituitary gland dysfunction and absence of the septum pellucidum.
Jade said they were in turmoil when they found out and did not know how they would cope.
“As a parent you think of so many things when your child is growing in your stomach and one has conversations with him/her. You also have a vision of the type of person your child will become. However, it was sad and difficult when we learnt that Jarred has septo-optic dysplasia.
“We as parents need to look at things differently, though, and know that we can get through anything that is put before us. Although this is not the plan we had for our child, we need to make every day count and look at the blessings that we have and stay positive.
“When we wake up in the morning we need to remember that gratitude erases negativity. Jarred always reminds me of this fact and I will always be thankful to him for this,” she said.
It’s World Autism Awareness Day on April 2 and Jade said more exposure needs to be given to autistic children.
“To all the parents out there that are doing the best they can, I commend you and urge families to really stick together and help out where they can. It is important to have a great support system as we also need time to wind down and take a moment for ourselves.
“Jarred has faced a lot of challenges in his life and has really shown us the true meaning of resilience, but through it all he remains a kind, soft, happy, humble and most of all an openly loving and affectionate person.
“He loves to swim and adores spending time on the beach, running sand through his fingers and toes and as long as he has food in his mouth then he is happy. He is truly a light in our lives and we will continue every day to give him the most comfortable and best life that we can,” she added.
Operations manager at Autism Western Cape Zaida Frank said: “While we do not have accurate statistics in South Africa, autism diagnosis is on the rise. According to the Centers for Disease Control and Prevention, one in 44 children in the US are diagnosed as autistic. This is a US statistic, however. We cannot be certain that rates are lower in Africa than anywhere else.
“We see that there is about a 10 to 15% annual increase in the percentage of children who receive this diagnosis. With so many individuals being diagnosed, we need to become more aware and accepting of autistic individuals in order to create a society that is accommodating.
“I believe with more awareness, understanding and knowledge of autism, it will lead to better services and an improved life for autistic (children),” she said.
If you would like to follow Jarred's story, join Support Jarred Ethan Bougaardt on Facebook.