Tag Archives ROHHAD

IVIG received – much needed

On Tuesday, we headed out to our other new hospital – Huntsman Cancer Institute in St. George.  This is where Haven will get her port flushed every 4 weeks, and then every 6 weeks she will get her labs drawn, and then every 8 weeks she will get IVIG.  So, we actually get a one…
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Spring round of IVIG

After Grandma and Grandpa left, we had a day of chemo. Haven has started to not want to see the needle to go in to her chest. She uses a 1 inch needle and her numbing cream. Since doing her Hi CY, she has begun to feel a little bit of pain. Not much, but…
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Another Angel Welcomed by our ROHHAD Children

In January, I told the world about Heather, who after 18 years of searching, was finally diagnosed with ROHHAD after seeing Haven’s special on Mystery Diagnosis. On Friday, May 27th, Heather passed away, leaving us with a void in our hearts but strength knowing another angel is watching over all of our babies. We are…
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ROHHAD child wakes from coma after 38 days

Natalie is a ROHHAD child from Malaysia. We met her and her mother on Facebook, and we have come to know them very well since they joined our ROHHAD site. On April 26th, Natalie fell in to a coma while at the hospital. We are extremely happy to report that Natalie has come out of…
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Our ROHHAD world

While the world keeps turning out there in ROHHAD developments we have stayed on the quieter side lately. We know approximately 38 families now with a child with ROHHAD – ranging from early 20’s to 3 years old. All very similar yet different symptoms. It’s interesting to learn about each child because we are all…
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Haven’s Mysterious Condition Identified as ROHHAD

READ ABOUT HAVEN ON HOPKINS WEB SITE!!!! BELOW IS A CLIP — CLICK HERE FOR THE COMPLETE ARTICLE!!! Haven Fowler was born a healthy baby. She remained so until the age of two and a half when she began to gain weight very rapidly, gaining 40 pounds over eight months. She also started having unusual…
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Sofie – An Angel Reborn

The broken cord We little knew that morning that God Was going to call your name. In life we loved you dearly, In death we do the same. It broke our hearts to lose you, You did not go alone; For part of us went with you, The day God called you home. You left…
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ROHHAD on Mystery Diagnosis and OWN (Oprah Winfrey Network)

Mystery Diagnosis Trapped Inside Their Bodies January 12th – 8pm EST Will the bizarre growths on 17-year-old Matt’s body eventually leave him trapped in a second skeleton? When two-year-old Haven starts to gain weight at a shocking rate, her parents have no idea it will spiral into a battle for her life. MISS HAVEN ON…
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ROHHAD sucks

As with most mothers of a child with Cancer I should be stressed and worried about this and it coming back. If you sit and think of one of the worst things that could happen to your baby it would be that they would be diagnosed with Cancer that randomly selects who it wants to…
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