The Myhre community shared their stories in the lead up to Rare Disease Day – inspiring and poignant and we thank you all for your contributions to help raise awareness and understanding.
April from Massachusetts created a video of her and Alec, her son, as they demonstrate American Sign Language (ASL). Hearing loss is a symptom of Myhre syndrome that impacts so many in our community. April has been learning ASL to support Alec, and we think they’re both amazing.
A group of friends in Texas are selling bracelets to raise money for Myhre Syndrome Foundation.
The ‘Morse Code’ bracelets are handmade and are $5. This entrepreneurial group last year raised $5000 for MSF – well done girls you’re making a huge difference to our entire community.
Sophie from France and mum to Rafael, shared this image of Rafael enjoying art, with the accompanying quote. Simply beautiful.
"If he had been like all the others... We wouldn't have the talent to relate things that are of little importance in life. We would never have - like now - this philosophy of life, this view on humanity and the same respect for difference. We wouldn't have understood the same way today the meaning of unconditional love."
Hilde De Clercq
Leanne created stained glass birds to raise funds for MSF and as a tribute to Miranda, her daughter who had Myhre and who passed away in 2018. Leanne you continue to be an inspiration and we are so thankful for your ongoing support.
“I started doing stained glass with my boyfriend just over a year ago. All self-taught. We have only ever gifted piece to friends. I had made the first one or two hummingbirds and the response from friends and family wanting to buy them was quite overwhelming. I knew I didn’t want to sell them for a personal profit, that is when I thought of Myhre! What an amazing response from our Myhre community. The combined total raised in donations for the hummingbirds was $6000. I am overjoyed and so blessed to have been able to find a productive way to contribute to the Myhre Syndrome Foundation and honor Miranda! She would be so happy.”
Kate, is mum to Josh, who is four years old and was diagnosed with Myhre in 2020. “I chose this picture for Rare Disease Day because this absolutely sums up Josh in an instant. He’s fun, happy and loves dressing up! For Halloween he wanted to go as Vampirina, a character from a Disney show, and was thrilled with his little dress and headband. Young children are just themselves and I look at this picture and remind myself to be more Josh. Wear the things that make you feel great, do the things that make you feel good and, most importantly, don’t worry about what anyone else thinks!”