Sep 4, 2020

MOTHER SHARES ON SON WITH VISION LOSS DURING COVID-19

Tavish Gillan is a vibrant teen who’s full of heart and positive energy. At the early age of eight, Tavish began to experience challenges with his night vision and exotropia –a condition that causes the eyes to turn outward. As his vision began to worsen, Tavish’s also started to have difficulty with his mobility.

At the age of twelve, Tavish was diagnosed with retinitis pigmentosa (RP), an inherited retinal disease. In Tavish’s case, his RP was caused by a rare genetic disorder called Bardet–Biedl syndrome (BBS). BBS often leads to visual impairment and can affect many other parts of the body, including the kidneys.

Today, at the age of sixteen, Tavish continues to overcome many challenges. Andrea Gillan, Tavish’s mother has become a strong advocate for her son, helping raise awareness of BBS, RP and what it’s like to have a son living with a visual impairment and an intellectual disability.

We connected with Andrea to learn more about how Tavish has overcome some of his challenges and how he continues to persevere through the unpredictable times of the COVID-19 pandemic. 

Q&A with Andrea Gillan

Describe Tavish’s vision and challenges he is faced with.

Tavish started to lose his night vision at a young age (8 years old). From there, he started to slowly loose perception of colour, making it hard for him to distinguish objects and people’s facial features. In addition to his RP, he also has an eye condition called exotropia that causes the eyes to turn outward (opposite of cross eyed), this has caused mobility challenges when it comes to balance and depth perception.

Independence is a great challenge for him. We’re working hard to support him and build independence. Having a support/walking guide has helped him tremendously, and we’re always looking for tools and technologies that can help him further.  

What has been the impact of COVID-19 on your son?

The pandemic has not been easy on anyone, let alone a teen with a visual impairment. It’s been difficult on Tavish, not seeing his circle of friends in-person or going to summer camps. He misses social group interaction, but we’ve really learned how to be creative with technology, incorporating safer day-to-day activities.

What are some of the safe activities that have helped keep Tavish busy during the pandemic?

We were very excited when Tavish’s music camp went virtual! Tavish really enjoys this camp and we’re so happy he’s able to participate weekly from the comfort of his home.

He also enjoys daily video chats with his close friends, helping him stay engaged and giving him something to look forward to during the day.

In terms of keeping physically active, due to challenges with depth perception and balance, playing various sports can be hard, but he loves going for walks and even water-walking at the local YMCA.

One of his favourite social activities is to put on puppet shows with friends. He’s been practicing with a close friend to prepare for when he can put on his next group presentation.

How would you encourage other families with children with vision loss to keep motivated during COVID-19?

As a parent, connect with other members of the vision loss community and learn together.

For your child, encourage them to connect with other youth with visual impairments, this way they can share about what they’re going through. Finding someone they can relate to or talk with is important. For example, for Tavish, the upcoming FBC’s Young Leaders Summit is going virtual this October and we’re looking forward to connecting with other teens from the vision loss community.

Any final tips for parents with youth or teens living with vision loss?

Always offer support and be there for each other. Second, look for tools to help your child, anything that can help them do things on their own to help them build independence. Test out the different tools and technologies to see what helps and keep exploring!

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Thank you to Andrea for sharing Tavish’s story.

COVID-19 has impacted the vision loss community in many ways and we’ve been listening and learning to rising concerns. To better support you, we’ve developed a series of COVID-19 & Your Eye Health Resources.

We’re also offering a variety of virtual education programs this fall, including new View Point webinars  and Young Leaders learning opportunities.

If you would like to learn more about BBS, check out our resource page and FBC-funded researcher Drs. Drack’s BBS project.

If you would like to share your vision loss story with us, please fill out this form (a prompt to download the Word document form will appear with selecting the hyperlink).