Archive for the ‘Rachel Nielsen’ Category
Devastating Diagnosis: Rachel Nielsen’s Letter to her Brother
Hey Bro, I know writing letters and sharing sappy sibling moments together isn’t really our thing, but I felt I needed to address something that is happening in...
Rachel Nielsen: Admitted For Serious Infection and Prepping for Surgery
Kate Nielsen received a call this morning at 1:00a that her daughter, Rachel, does in fact have a bacteria infection in her central line. She will have it...
Rachel Nielsen: Harmons Cooking School Experience from Make-A-Wish
Special thanks to Chef Evan Francois and Photographer Renata Stone. Thank you to everyone at Harmons Cooking School. Thank you to Bob Leibo and everyone at Make-A-Wish. I...
“Scuff Mark” by Rachel Nielsen
You can do it, Rachel, I told myself as I visualized sticking the landing of my next skill. Trembling from anticipation, I wobbled, tightening my toes’ grip on...
Rachel Nielsen: Undiagnosed Rare Disease Patient
Please don’t write me off or tell me it’s all in my head simply because you don’t have answers for me. I came to the doctor’s because I...
Rachel Nielsen: Still Undiagnosed but we received some answers!
Another update! (You guys are probably sick of me by now😅😉🙈) I recently got some results back from a muscle biopsy in Wisconsin and I saw a geneticist...
Rachel Nielsen and Calen Forsythe: Prayers Needed
We have had a long day of negotiating between the University of Utah Hospital and Intermountain Primary Children’s Hospital for Rachel’s care today. She has two amazing doctors...
Rachel Nielsen: H.O.P.E (hold on, pain ends)
I’ve found that having a chronic illness is much like losing someone very close to you. People will say they understand your pain, they’ll tell stories about how...
Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families
Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....
Rachel- Undiagnosed with EOSINOPHILIC ESAPHAGITUS/COLITIS
Rachel, born in 1999. The youngest of four children. She has two brothers, a sister, and a sister-in-law. Her diagnoses are: EOE, EC, Gastroparesis, Delayed Motility, Orthostatic Intolerance, Neurogenic Bladder,...