Mama Bear for Rare
Michelle, the mom behind Mama Bear for Rare, received her daughter’s diagnosis less than two years ago, in the midst of a worldwide pandemic. Michelle knew the minute she laid eyes on Hailey, that something was going on. They went through genetic testing but found nothing. Doctors first believed Hailey had Dwarfism but her mom’s gut told her that was not it. Still, she immersed herself in research and a month later, finally feeling settled with the diagnosis, she called just to confirm the testing. Hailey did not have Dwarfism, she had Jordan Syndrome according to the neurologist. At this time, less than 200 people had been diagnosed with Jordan Syndrome. Michelle immediately dove head first into research again, raising awareness and advocating for her child and she has not stopped since.
Jordan Syndrome, or PPP2R5D-related intellectual disability, is a rare neurodevelopmental disorder caused by a genetic mutation. Like most diagnoses, it impacts everyone differently. Hailey has extreme hypotonia, or poor muscle tone. At two years old, she is still working on holding her head up. She is also non-verbal, has seizures, although they are currently controlled, and has global developmental delays. This does not stop her from being the sweetest, happiest child according to her mom and seemingly everyone who comes into contact with her. Hailey loves to engage with people and is very observant. She is most fond of her big brother, Noah and her dog, Bailey.
Mama Bear for Rare shares openly and vulnerably about the different emotions and experiences that have come up on this journey through her blog and her Instagram account. While social media often gets a lot of backlash, Michelle spoke to how meaningful the connections she has made online have been. The number of people diagnosed with Jordan Syndrome grows every day and research efforts have greatly increased in just two short years.
Michelle describes a beautiful life, one full of joy and wonder but not void of difficult conversations and realities. Just recently, as Hailey was approaching her second birthday, her older brother, Noah, asked if this meant she would start to walk. Being a neuro-typical, curious, five year old, he just could not understand why his sister does not walk or play like him. While answering questions like these can be gut-wrenching, Michelle reminds herself and her family that Hailey is not in physical pain and she exudes happiness. They know the obstacles Hailey faces will make her achievements all the more rewarding.