September 2020 – Raegan, A Caring Young Lady with a Big Wish!
September 1, 2020
A Mom’s Letter of How “Purple Puff” Helped Her Son Be Brave
October 14, 2020
Meet 15 years old Gavin. One of his nurses nominated him to be featured in as a “Chronically Caring Kids” because she feels he is a perfect example of someone who, despite his challenges in life, gives back to his community, spreads kindness, and fills a room with joy.
Gavin has juvenile arthritis (diagnosed at 21 months old) and uveitis (diagnosed at 2 years old). Gavin shared that because of the uveitis he cannot see as well as the average person, and it makes things harder. He has tools and supports to assist him. He uses a cane to help navigate unfamiliar areas and doorways. At school, he has a reading device called a Merlin. When you turn it on, it acts as a magnifying camera and it reads what you put on the tray, enlarges it, and displays it on a screen. He also has a smaller version, called a Ruby, which is more portable. In addition, he has a “BrailleNote Touch”. It is like a computer with Braille keys. It can read emails and schoolwork, along with assist with typing.
Gavin says that his illnesses have gifted him with some amazing people. His middle school was incredibly helpful in getting him supports and tools to make his school work easier. He also was connected with other kids with similar school experiences, and he is now forever friends with them. Gavin also enjoys video games and his iPad. Sometimes it’s a challenge due to his vision issues, but he is resourceful and figures it out.
It is important to Gavin that he helps others. Over the summer, he had a job reading to young kids with vision impairments using Braille. “Bess the Book Bus” is a program that has partnered with the Lighthouse for the Blind to provide free books with added Braille stickers to each page. The added Braille allowed him to read the stories to young kids. It not only made their day, but Gavin’s too. Plus he got paid. Who wouldn’t love that?! Gavin shared that he really loves making others happy and loves laughter, so this was a way to virtually do what he loves during the pandemic.
Gavin has great advice for other kids who may have similar issues with chronic illness. He says, “Even though it may not be cured, stay strong, everything will be alright. If you are feeling down, find some people who are going through the same thing and talk it out.”
Gavin’s favorite resources:
VoiceOver (a phone feature): it reads text on the phone screen
https://support.apple.com/guide/iphone/use-voiceover-in-apps-iphe4ee74be8/ios
Tampa Bay Lighthouse for the Blind: They have after school care and teach daily living skills, computer work, general life skills, and transportation. In addition, they offer summer work experiences. And it is for all ages, young to elderly.
