According to a story from ozarksfirst.com, Jamie Simoson was taken completely by surprise when her three year old son Jonathan started complaining about a headache. As his condition worsened, Jonathan…
When Ryker Colón was first born, his parents Eddie and Brandi noticed something potentially concerning. Their young son had a chronic cough - and nobody could seem to figure out…
Jason and Rachel Moore were always excited to start a family. Currently, the pair has two children – Naomi, age 21 months, and Lacey, age 4 months. But their journey…
Fibrodysplasia ossificans progressiva (FOP) begins with very little warning. When children are born with FOP, they appear normal aside from a possibly characteristic malformation of the largest toe that…
The Catawba Virginia Farmers Market’s mission is to provide the Catawba community with local produce and handicrafts. Stephanie and Donald Schneider owners of Pacaberry Farms have been vendors at the…
Written by Molly D'Angelo I’m like most parents in that I never want to see my children hurting physically or emotionally. We would do anything to prevent their pain—put a…
According to a recent article, the parents of a boy with epilepsy were told they would need to prepare for him to have end-of-life care after they were unable…
To Diem Nguyen, her daughter Minh is her whole world. Diem would stop at nothing to ensure her daughter gets the help that she needs. That's why, recently, Diem…
In 2020, Anthony Di Laura and Jackie Cucullo were over-the-moon. The married couple had just learned that Jackie was pregnant with their first child. Anthony and Jackie were thrilled…
Continued From Part One Written by Becky Tilley Finally I found a role that I was appreciated in, at least by the kids. I wasn't very welcome by the girls…
22-year-old Ruchita Sahukari is currently studying Literature and Sociology at the Indira Gandhi National Open University (IGNOU). Her journey to pursuing her degree began with the assistance of non-governmental…
Written by Becky Tilley My name is Becky Tilley and I am a rare woman, mama, writer and advocate. Also am proud wife to my husband Carl and mother to…
Danielle Morley of Radcliffe, UK, has been an advocate for plasma donation ever since being diagnosed with a rare blood disorder called immune thrombocytopenic purpura (ITP) during her first…
When Eleni was first born, doctors and nurses told her parents, Neil and Eloise, that their daughter would most likely not survive. That’s because Eleni had been diagnosed with…
12-year-old Rohit, who hails from Uttar Pradesh, India, has a dream to one day become a singer – and he’s ready to pursue that dream no matter what. Throughout…
When Nicole Croxton and Pete Nappi first learned that they were going to have another daughter, the pair were thrilled. But during the course of Nicole’s pregnancy, doctors filled…
CBC News Canada carried the story of a 23-year-old patient, Morgan Buyaki of Saskatchewan, Canada, who was diagnosed eighteen months ago with eosinophilic granulomatosis with polyangiitis (EGPA). Morgan’s mother…
One thing is sure: 29-year-old Aimee Read was always a fighter. At just two years old, Aimee was diagnosed with leukemia. After two years of chemotherapy and six months…
Don't forget to check out Parts 1 and 2 of our interview, where we discussed APFED, eosinophilic esophagitis (EOE), and Lori's diagnostic process. Today, in the final portion of the interview, we're…
If you're just joining us, don't forget to take a look at Part 1 of this interview. In Part 1, we discussed Lori and Mary Jo Strobel, what eosinophilic esophagitis (EOE) is,…
Food has the power to change lives, to spark connection and understanding, to raise cultural awareness, and to bring people together. Nobody knows this better than 48-year-old Lori, who spent…
The National Organization for Rare Disorders (NORD) recently held its Living Rare, Living Stronger Patient and Family Forum on June 26, 2022. This event took place both virtually and in-person…
The patient, age 82, had recovered from a stroke several months ago. According to a recent article reported on dnyuz.com and originally published in the New York Times, the…
In 2019, Courtney and Michael Henderson welcomed the newest member of their family – their son Luke. They were thrilled at this new addition, who they say is one…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
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