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Rare Disease Day: stories full of hope and strength

Posted at 7:40 AM, Feb 28, 2019
and last updated 2019-02-28 08:35:31-05

Today is Rare Disease Day, recognized on February 28th, one of the rarest days of the year. Here in West Michigan there are dozens and dozens and families who are touched by rare conditions. We feature them often on Fox17. Their stories are full of strength and inspiration.

Here’s something eye opening, 1 in 20 people worldwide live with a rare disease at some point in their life. Yet, 95% of these diseases have no treatment available. Children also represent the majority and these diseases are responsible for taking the lives of 35% of children in their first year of life. As hard as the numbers might be to hear, there are real life warriors living among us who are Beating the Odds every single day when it comes to living with a rare condition.

Roslyn (Rozy) Arlene is one of those warriors.  She and her mom Tiffany Breen joined us in studio to share their journey.  Doctors told Tiffany when she was 27 weeks pregnant that Roslyn would not survive after birth. But, everyday she shows just how wrong those doctors were and how strong she really is. She will be 5-years-old soon. According to her mom she is “undiagnosed, but given the umbrella description of arthogryposis. This means she has severe contractures and is unable to fully open her joints, and has extremely poor muscle tone. Roslyn’s range of motion and muscle tone are increasing, but overall she is extremely delayed in the gross motor area. She is unable to swallow effectively and is tube fed.”

But don’t be fooled, this doesn’t hold her back.  Her mom says, “Roslyn has a smile that will fill your eyes with happy tears, and leaves beauty where ever she goes. And she happens to look incredible in headbands! Roslyn Arlene is changing this world one day at a time.” Roslyn is also “Little” Miss Wheelchair Michigan 2019 and an ambassador forLori’s Voice.