A group of women meet regularly at the local Tim Hortons and on Wednesday, October 23rd, they all showed up wearing the same outfit, all in support Rett Syndrome Awareness month, which takes place each October.
The ladies wore matching purple shirts in honour of their friend Kathy Lengyel’s granddaughter Brooklyn, who was diagnosed with Rett Syndrome when she was a child.
According to the Mayo Clinic website, “Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. This disorder causes a progressive loss of motor skills and language. Rett syndrome primarily affects females.”
Initially, babies will develop as expected and then within 6-18 months, they begin to lose skills they previously had such as crawling, walking, communicating or using their hands. It affects 1 in 10,000 females, and even more rarely in males.
Kathy Lengyel’s granddaughter Brooklyn, who is now 24 years old, has helped her family and friends learn more about Rett Syndrome and in turn, they are taking that knowledge to help spread awareness.
The coffee crew received their free purple Rett Syndrome Awareness shirts through a campaign organized by the Saskatchewan Rett Syndrome Association.
“By wearing this pRETTy awesome t-shirt, you can help spark conversations about #RettSyndrome and encouraging everyone to truly see, hear and celebrate those living with Rett by honouring their unique qualities, aspirations, struggles and triumphs,” the Saskatchewan Rett Syndrome Association stated via social media.
Two mothers of the Manitoba Rett Syndrome Association were the creative minds behind the t-shirt initiative, and Acadia Pharmaceuticals Inc. Canada sponsored the campaign.
“It takes a lot of support and we are so grateful to everyone that wears a shirt to help bring awareness. If we can help reach more people each October through wearing these shirts, and there might be someone out there that doesn’t know what is going on with their child, maybe it can help them get the correct diagnosis. A lot of kids with Rett Syndrome get misdiagnosed, so if we can help spread awareness, it might help a family get the supports they need that much sooner,” Kathy Lengyel stated.
