July 24th, 2013 by

Sophie’s Journey

This is our friend Sophia.  She has been a long time friend of Haven’s and we love her family dearly.  Lately Sophia has been struggling with getting help from doctors and has been waiting to start treatment.  I have included a note from her mom below and there is a link to her Facebook page.  Please check out her page and keep yourself up to date on Miss Sophia.

Sophie’s Journey

I would like to tell you a little bit about my Sophia. She is the youngest of six and was born on October 19,2004, by C-Section. She was only a C-Section because i had one before her. She weighed in at 9 pounds 6 onces and was 21 inches long. Sophia was healthy but she was diagnosed with kidney reflux at 3 months old and antibiotics took care of it. She would out grow the kidney reflux by her second birthday. When Sophia was 18 months old she was tiny at 20 lbs but by the time she was 22 month she had gained almost 25lbs her pediatrition sent us to the OWL program at childrens hospital that’s when we met Dr. Rhodes. i explained Sophia’s symptoms – the throwing up, the thirst, the constipation. So after 2 long years of medical appointments and testing Sophia has been diagnosed with ROHHAD syndrome.

( Rapid onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation).

We have a long road ahead of us and not knowing when her body will stop working is very difficult. Just knowing that is a daily struggle. I will try and update Sophia’s progress daily in her journal and will soon add pictures and medical updates and appointments. I want to thank everyone for the support I have received since receiving Sophia’s diagnosis.

We are almost 2 years into our diagnosis and things have progressed with Sophia’s symptoms and she has gotten more symptoms and has lots of medications to take each day. I have meet some great ROHHAD families since her diagnosis and the internet has brought all of us closer together. I will continue to spread the word about ROHHAD in hopes that more families will be able spread the word. And to help other families who are looking for a diagnosis for their child.

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