Recent Posts

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Stephanie Valdez’s Question re: Harlie: Has anyone had any experience with Cytoxan or Tacrolimus?

June 9, 2015 11:40 pm

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Stephanie Valdez: “I just wanted to give everyone an update on Harlie’s MRI.  Our rheumatologist came in and talked to us yesterday. He wants us to consider a...

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Ava Szajnuk defies the odds and rides a horse for her 8th birthday present.

June 6, 2015 10:23 pm

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Gina Szajnuk: “Ever since Ava could talk, she wanted to ride a horse. As a very anxious mother, I was terrified of the thought of  Ava riding a...

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Tute Genomics: No Child Left Undiagnosed

June 6, 2015 10:03 pm

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No Child Left Undiagnosed “We envision a world where every child and every patient who requires a diagnosis receives one, in time for it to make a difference.” Reid...

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Grayson’s Story: We live in the USA where we would have never thought getting care would have been so difficult

June 5, 2015 10:55 pm

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Kay McClure:“Grayson, a native Memphian, has been sick since just before his 12th birthday, and he turned 22 years of age in January, 2015. He experienced a normal...

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Katie Nuffer’s Update on living with MHE

June 5, 2015 9:33 pm

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Katie Nuffer:  “Hey Everyone. It’s been almost 8 months since I broke my arm. Things are still pretty hard, and painful… However I can go out and push through...

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Ava Szajnuk’s 8th Birthday…remembering the day before she was born.

June 4, 2015 10:31 pm

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Happy 8th Birthday to our Ava.  Gina’s Monologue to her unborn child a day before she was born, Ava.   We pray for you to have many, many...

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Stephanie Valdez: We are eternally grateful to all of you…

June 4, 2015 12:13 am

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Stephanie Valdez: “Good evening, I just wanted to give an update on Harlie…. It’s been a busy week for her! She’s been working hard in therapy and it’s...

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Szajnuk’s family photo. June 2nd, 2013. What has changed since then?

June 2, 2015 4:00 am

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Today is June 2nd, 2015. The family picture we always use is now two years old. What has changed in the last two years? Ava had no idea...

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Much better than a hospital room!

June 1, 2015 10:34 pm

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Harlie Valdez and Ava Szajnuk enjoy a night out together: This past Saturday night was a great night at The National Ability Center’s Barn Party. For Harlie, it...

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Harlie’s cousin: Keely Valdez’s Article on RUN for her school newspaper

May 30, 2015 1:46 am

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Rare and Undiagnosed Network By Keely Valdez A once healthy child who may have done sports or stayed active, had a great sense of humor, or who was...

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