Archive for the ‘Rachel Nielsen’ Category

Devastating Diagnosis: Rachel Nielsen’s Letter to her Brother

June 1, 2017 10:35 pm

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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...

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Rachel Nielsen: Admitted For Serious Infection and Prepping for Surgery

March 11, 2017 10:17 pm

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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...

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Rachel Nielsen: Harmons Cooking School Experience from Make-A-Wish

March 3, 2017 8:19 pm

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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...

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“Scuff Mark” by Rachel Nielsen

December 20, 2016 6:41 pm

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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...

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Rachel Nielsen: Undiagnosed Rare Disease Patient

October 31, 2016 8:36 pm

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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...

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Rachel Nielsen: Still Undiagnosed but we received some answers!

October 21, 2016 8:20 pm

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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...

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Rachel Nielsen and Calen Forsythe: Prayers Needed

September 28, 2016 11:31 pm

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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...

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Rachel Nielsen: H.O.P.E (hold on, pain ends)

September 11, 2016 4:06 pm

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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...

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Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families

March 25, 2016 4:09 pm

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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....

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Rachel- Undiagnosed with EOSINOPHILIC ESAPHAGITUS/COLITIS

February 25, 2016 6:50 pm

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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,...

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