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Empowering the Tay-Sachs Community through Video

Grace created a wonderful video empowering the Tay-Sachs community by explaining what Tay-Sachs is. After interviewing her, I got to find out more about how she plans to raise awareness for Tay-Sachs and anyone who is affected by it.


Last week, I had the opportunity to talk to Grace, a talented 10-year-old who likes making videos, websites and apps. Her sister, Amelie, was diagnosed with Tay-Sachs at 18 months old and lived for eight years, despite her family being told she may pass away in early childhood.

Grace explained Tay-Sachs as a genetic rare disease. It occurs when a child inherits a mutation in the HEXA gene from both parents. It is so rare it only affects one in 320,000 people in the world. Some symptoms children diagnosed with Tay-Sachs face are losing the ability over time to talk and walk due to loss of motor skills and eat because of problems swallowing. This means individuals with Tay-Sachs usually end up requiring being fed by a tube. These are only just some symptoms, where Grace told me that:


“Amelie couldn’t eat and she was pretty, nice and beautiful.”

When Grace was at a loose end one day due to it being her summer holidays, she made an amazing video explaining what Tay-Sachs is. She enjoys making videos and apps, so she thought she would try something new. She made the video to help educate people where instead of making a poster, it would be more engaging by portraying her explanation through video. Using Render Forest, she says it was a lot easier due to there already being many templates where you can just add content to the video. So, it wasn’t as difficult as she thought it would be.


“When I finished the video, I felt really happy as it took me a bit of time. But it was my first video, so I was very happy,”

Grace doesn’t only make videos, but apps too. She thinks apps are good because you get to press buttons and look at it more as you build it. So, she thought it would be cool to make an app as she wanted to do something fun.


She is currently making an app for the Sibling Squad, which includes not only video, but posters and books too. She hopes her app will help children who have siblings or family relatives impacted by Tay-Sachs or Sandhoff disease. Although it was fun to be a sibling herself, she says how sometimes it was a bit difficult. For example, since Amelie used a wheelchair, they couldn’t go on planes.


However, Grace told me if your sibling is diagnosed with Tay-Sachs or Sandhoff disease, to remember it doesn’t mean you can’t do things as you can. She thinks everyone can achieve things if they put their mind to it.


Now, Grace aims to make more videos, not just about Tay-Sachs but about the impact the disease has on an individual and their family, such as the symptoms in more detail rather than just a general overview. After seeing how her first video turned out, I know her next one will be even more amazing!

 

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