According to a story from today.com, Dr. David Fajgenbaum was first diagnosed with Castleman disease in 2010. His first encounter with the illness was terrifying. He was confined to the…
Visit any pediatric ward in a hospital or medical center and you will see many pieces of medical equipment, but visit the OT and PT departments and you are in…
Although having a child with disabilities is no doubt stressful, the stress and worry does not necessarily lessen as the child grows older. As children with disabilities age towards adulthood…
Andrea Jenkyns is a member of the British Parliament and new mother. She was elected as the Conservative Member of Parliament for Morley and Outwood at the 2015 general election.…
“It’s a literal miracle every time I sing,” says Charity Tilleman-Dick. Charity is an opera singer that reaches the top of the charts. That’s miraculous enough for most us. Charity,…
According to a story from uk.news.yahoo.com, when Billy Caldwell, age 12, and his mother returned from traveling to Canada, the Home Office initially confiscated a substance that had been the…
According to a story from The Spectator, Madeline Pitts, who has two forms of terminal cancer, will have June 9th be dubbed "Maddie Day" in her honor. She is thirteen…
According to a story from apnews.com, Mike Coble, a senior at Byron High School in southeastern Minnesota, was recently diagnosed with Guillain-Barre syndrome. Mike is on three different sports teams…
According to a story from tdn.com, the radio host Jamie Dupree will soon return to work after nearly a two year absence. However, he will not be doing any announcing…
Lisa Ray starred in the 2005 film Water. She also appeared in TV shows such as Endgame, Psych, and Top Chef Canada. Now, as an advocate for people with multiple…
According to a story from the Ottawa Sun, several hundred people participated in the annual ALS Walk on June 9th, in which people walk down the Sir John A. MacDonald…
Six-year-old Hope has spent her early years in and out of hospitals for treatment for the neuroblastoma tumors that populate her body- her lungs, stomach, arms, and even her spine…
In today's ever-changing - and downright weird - world, you'd be correct to say say (if not over-say) that technology is slowly killing us. But not in this case! Good…
According to a story from CBS News, Clay Emerson, from New Jersey, is hoping to use Father's Day in order to raise awareness about his three year old daughter's rare…
Finding the right doctor for a patient can often be a long and personal process. It’s not just a matter of effectiveness or efficiency, but a matter of comfort and…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
The below article was originally published on June 14th, 2018 in Miracle Flights Newsletter, The Co-Pilot, and is being republished here with permission. Rebecca is big sister to 10-year-old Amanda…
Click to read parts one and two of Joanie's story. Since 2012, when I left my job as an educator, I have tried many different modes of medical therapies. I'm…
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
A Nigerian mother, Hafsat Aliyu has penned a moving tribute to her beautiful daughter, Zainab, who died of Hodgkin lymphoma, a type of blood cancer, on May 7, 2015. She…
To read part one of Joanie's story, click here. In 2014, I developed excruciating back pain and eventually the doctors found I had two spinal cord tumors. One was on…
Mallory and Dave Holmes were excited. Like many couples, they were eagerly awaiting the birth of their first child. After 20 weeks of pregnancy, however, the couple received news that…
At age 60, I am learning to love and accept the woman I am right now. This is long overdue: I never envisioned a life walking with a white cane…
As a 26-year-old working mother, all of life seemed in place. A rewarding job, a precious baby, and a supportive husband filled the hours and made for great memories. Days…
In 2017, a group called “Traveling CVS Warrior” was created on Facebook. This is a group I created that sends a stuffed animal aka a Cyclic Vomiting Syndrome (CVS) Warrior to…
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