Search results for ‘aliyah’

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Aliyah Peedle Update: VACTERL Assoc., Gastroparesis, Chronic Lung Disease

April 21, 2016 11:45 pm

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Amy Peedle updates us on her daughter: Aliyah will be getting both her tubes changed out tomorrow. They are due to be changed in June but because we...

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Aliyah-VACTERL Assoc., Gastroparesis, Chronic Lung Disease

February 9, 2016 6:01 pm

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Aliyah is 14 when she was born she weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...

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Aliyah Peedle will need surgery this week. When heading home from hospital tonight, they were rear-ended. Now, waiting to hear if admitted.

January 25, 2016 8:54 pm

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Amy Peedle: “Aliyah got something stuck in her esophagus 10 days ago and has not been able to eat anything by mouth, she was able to drink some...

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Amy Peedle shares her journey with her daughter, Aliyah.

January 12, 2016 6:31 pm

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Amy Peedle: Aliyah was born March 9th, 2001.  She weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...

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Media

November 11, 2016 7:46 pm

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RUN in the MEDIA  LINKS  Rare & Undiagnosed Network Provides Advocacy, Networking and Support for Patients and Families Utah Rare Disease Day Recap 2023 Global Genes Patient Advocacy...

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National Ability Center Event today, May 14th: RUN’s Undiagnosed Day Without Doctors

May 14, 2016 5:16 am

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Time for some Rare FUN today! This is an intimate event for our Rare and Undiagnosed families to share their diagnostic odyssey and to network about doctors, treatments...

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We are not defined by “VACTERL Assoc., Gastroparesis, Chronic Lung Disease” by Amy Sue Peedle

April 29, 2016 3:54 am

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Even though Aliyah is very sick. We are strong together. Aliyah is a fighter. I am a fighter. She will persevere. I will persevere. We are so very blessed. We...

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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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Rare Mom’s Letter to Hollywood: “Miracles from Heaven”

March 23, 2016 5:34 pm

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Dear Hollywood, As a mother of three rare and undiagnosed children and the Co-founder of the Rare & Undiagnosed Network (RUN), thank you for making the movie “Miracles...

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Rare Teen Photo Shoot by Aware of Angels, Utah Rare and RUN!

January 24, 2016 8:46 pm

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The RARE TEEN PHOTO SHOOT was a HUGE success!  Season Atwater, Aware of Angels, is such a talented photographer!  Thank you to Angel Benson, Maddie Benson, Julie Jackson, Kristen Packard, Rebecca...

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