News, Events & Blogs
Madelaine and Ally's Story
Madelaine had a normal pregnancy and gave birth to a healthy baby named Ally in a small, less than 10,000 person town named Manitoba, Canada. Ally was Madelaine’s second daughter, with her first being her neurotypical eldest daughter, Bethany.
Kelley and Ryan's Story
At birth, Ryan was diagnosed with bilateral sensorineural hearing loss and an umbilical hernia. A few weeks later, she was diagnosed with macroglossia and an oversized liver. After piecing together a puzzle of symptoms, including Ryan’s spontaneous birth, her pediatrician made the diagnosis of Beckwith Wiedemann Syndrome (BWS) at three months. Kelley was relieved to have a diagnosis. With a name to lead the way, this initial answer pointed their family towards further work-up, medical research papers Kelley could read to learn more, and treatment options.
However, Ryan’s story did not end with BWS. She continued to be in pain for the first 1.5 years of her life because there were several other symptoms that were unaccounted for in the initial BWS diagnosis, and therefore not addressed.
Alex and Caroline’s Story
Caroline Cheung-Yiu is the parent of a child living with a rare disease. Her son Alex is a RareWear participant who was issued a device in connection with the RareWear program which monitors vital signs. Caroline graciously shared her family’s story with us in the hope of helping others who might benefit from the RareWear program.
Interview with RareWear Patient Heidi Woods
The Rare Genomics Institute’s RareWear program connects rare disease patients to medical device providers, which offer free devices to help patients to better monitor and manage their conditions. RareWear is an ongoing program and patients are welcome to apply throughout the year. Learn more about RareWear here: https://www.raregenomics.org/rarewear/home.
Heidi Woods is a RareWear participant who began using her device, a Holter monitor to measure heart rate, earlier this year. Heidi was diagnosed with Ehlers-Danlos syndrome in 2009. Heidi graciously shared her story with us in the hope of helping others who might benefit from the RareWear program.