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Rare Disease Day 2019: Celebrating Willow’s Birthday and Supporting Other Children who are Literally “One in a Million”
At 9 months old, Willow was diagnosed with mucolipidosis 2 (I-cell disease), a very rare genetic mutation that affects less than 100 children worldwide. I-cell disease hinders physical growth in children around the age of two, leaving them small despite their age. The mutation also causes heart and respiratory complications, which means many long and difficult hospital stays. Willow spent most of her first year of life in the hospital while her family moved from Montana to Washington for better children’s medical care. Through all of this, Willow continues to be a sassy and smiley little sister. She spreads love and is an inspiration of how to live in the moment of each day, feeling grateful.
Willow is a fighter. Despite her challenges, she continues to overcome the odds and celebrated her third birthday with a beautiful teapot cake created by Mary Ann Quitugua. To stay updated with her journey visit her Facebook Page.
Although there is currently no cure for I-cell disease, raising awareness is an important step towards finding one. That is why we celebrate rare disease awareness day on February 28th. The theme for Rare Disease Day 2019 is ‘Bridging health and social care’. Around the world, people living with a rare disease and their families face challenges every day bridging the gaps in coordination between medical, social and support services to meet specialized daily needs.
Rare Disease Day 2019 is an opportunity to be part of a global call to policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.
Visit
Rare
Disease Day 2019
to learn more about the campaign and how you can get involved!
With Love and Smiles,
Olivia Graupmann
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