The story behind Skyler's decision to celebrate her birthday on Rare Disease Day
Our beloved unicorn mascot, Skyler, celebrated her 2nd birthday by treating us all to ice-cream cake on Rare Disease Day! Read more about her involvement with the Rare Bear Project.
Why did Skyler celebrate her birthday on Rare Disease Day?
Most of you might know Skyler as our jet-setting mascot who leads our global expansion from the front. She spends much of her time visiting trade shows, meeting new business partners and signing up new customers. She's very much at the forefront of innovation at Skynamo but as a member of the Rare Bear family, she also prioritises fundraising for benefactors of the Rare Bear Project.
Skyler was born in 2018 into the Rare Bear family in Johannesburg, South Africa. The Rare Bear Project is a partnership betweenRare Diseases South AfricaandKya Kids. Kya Kids teaches unemployed women in their community how to crochet these Rare Bears – giving them the opportunity to generate income. Skyler was created by one of these ladies and continues to help the Rare Bear Project on a long-term basis. Skynamo contributes to the Rare Bear Project every time a picture of her appears on social media platforms.
Fittingly, Skyler decided to celebrate her 2nd birthday on Rare Disease Day with her Skynamo family this year.
Skyler (far right) with some of her friends from the Rare Bear Project.
Who inspired Skyler to become part of Skynamo?
Skynamo employee Tina Joubert's daughter, Clara, was her inspiration. Skyler met her through the Rare Bear Project and was inspired by her bravery. She gave Skyler the courage to step out from her home in Johannesburg and represent Skynamo across the world.
Clara spent much of her early life in hospitals while doctors struggled to accurately diagnose changing symptoms that affected her health. At the age of 3 and a half she was diagnosed with Common Variable Immune Deficiency. It's a possible lifelong immune disorder characterised by recurrent infections and low antibody levels.
This means that six-year old Clara has been undergoing Polygam treatments (similar to blood transfusions) every 4 weeks, and will be doing so for the foreseeable future, to help strengthen her immune system and lower her risk of infection.
Skyler always makes sure her busy schedule is cleared on the days Clara goes for treatments, accompanying her brave friend to the hospital every month.