AngelaRose Apparel was started by Evelyn’s mom, Anna. Named after Evelyn Rose and her sister Marian Angela, this company’s goal is to offer availability of adaptive clothing and accessories at affordable prices. As Evelyn was growing up, it became more and more apparent that something was just not quite right. She was not reaching her milestones as a baby, not moving around as much as usual, and not acting like the typical baby. After finally convincing the pediatrician that Evelyn was growing up way too slowly, years of testing and doctor’s visits ensued. Diagnosed with only hypotonia and global developmental delays, her family learned to adapt to her needs. Many of the day-to-day necessities for Evelyn were either not available, too expensive, or just not made in ways that would work for her needs. Her mom became creative, as many of us special needs parents do, and started to make her own items for Evelyn: a homemade safety bed, handcrafted bibs and food aprons, knee protection/pads, etc. Ideas started to flow across paper and she knew someday she would have to share these with others who have similar needs. Eventually, Evelyn was diagnosed with an ultra-rare condition called Lunapark (LNPK) Syndrome at age 7. This started a whole new world for Evelyn and her family, as new directions were found. A search for treatments became the primary focus. As AngelaRose Apparel took off, the goals pushed more toward fundraising for gene therapy. Thus, it was decided that a portion of the profits from AngelaRose Apparel should go directly toward just that. And with finding another Lunapark family who already started a non-profit, this seemed like the best way to not only share the opportunity for others to have adaptive apparel and accessories but also help with funding for gene therapy. Please join us on our journey and follow the lives of Evelyn and Olive, the only two diagnosed Lunapark girls in the USA. Information on this disorder and a place for donations can be found at www.rareolive.org, and you too can help promote research and treatments for this rare disease.
