• MEET US
    • Our Mission
    • Our Vision and Objectives
    • In the Press
  • WHAT IS MCADD?
  • OUR COMMUNITY
    • Our United States Community
    • Our International Community
    • In Loving Memory
Minutes Matter
  • GET INVOLVED
  • BLOG
  • CONTACT
    • Get to Know Us
    • Contact Us
    • New Member of our MCADD Community
    • Join Our Cause
    • Volunteer with Minutes Matter
  • DONATE
  • MEET US
    • Our Mission
    • Our Vision and Objectives
    • In the Press
  • WHAT IS MCADD?
  • OUR COMMUNITY
    • Our United States Community
    • Our International Community
    • In Loving Memory
  • GET INVOLVED
  • BLOG
  • CONTACT
    • Get to Know Us
    • Contact Us
    • New Member of our MCADD Community
    • Join Our Cause
    • Volunteer with Minutes Matter
  • DONATE
October 27, 2019  |  By Beth Vannoy In Uncategorized

Pharis’s Story

IMG_0197

Meet Pharis! He was born on April 11, 2019. Pharis was discharged from the hospital the day after he was born, after experiencing unstable temperatures and sugar levels in the hospital. When he and his family got home, his parents knew that something wasn’t quite right. Pharis was very fussy during the night, and then he drifted into a deep sleep. He became very lethargic the following day. He wouldn’t eat, and he felt cold to the touch. His parents checked his temperature and it was very low, so they rushed him back to the ER. When they arrived, his temperature and sugar were dangerously low. Doctors began running tests and giving him medicines to try to help, but nothing was working. Then, his oxygen dropped. Pharis was transferred to a different hospital with a higher level NICU where they placed him in isolation and continued running tests.

On April 16 his parents received a call from his pediatrician asking them to come in as soon as possible because Pharis’s newborn screening came back positive for MCADD. Because Pharis and his family were in the NICU in El Paso, Texas, they became coordinating care with a neonatologist. A second round of testing was completed, and they were again transferred to a military hospital in San Antonio to confer with a metabolic team. While there, the metabolic team taught Pharis’s family about MCADD, how to help Pharis, set up a care plan, and provided Pharis’s family with the medicine he needed.

Pharis remained very sleepy and not as active as he should have been for about three weeks. Pharis’s parents were told by many doctors that had they not taken Pharis to the ER that he would not have made it through the night. Pharis’s mom said, “God was watching over our sweet boy, and we are so thankful that He took care of Pharis during his metabolic crisis. Every day we are reminded that God created Pharis for a special purpose and He does not make mistakes!” Pharis is now 6 months old, doing great, and eating like a champ!

Previous StoryFaith & Magic
Next StoryA Simple Heel Prick: Emma’s Story

Related Articles

  • IMG_0197
    Pharis's Story
  • Emma_29
    A Simple Heel Prick: Emma's Story

Leave your comment Cancel Reply

(will not be shared)

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Latest Posts

  • Heather Wedding & Dr. Roe
    A Groundbreaking MCADD Diagnosis Sunday, 28, Feb
  • IMG_0197
    Pharis’s Story Thursday, 26, Mar
  • Emma_29
    A Simple Heel Prick: Emma’s Story Sunday, 3, Nov
  • IMG_0197
    Pharis’s Story Sunday, 27, Oct
  • Faith & Magic Wednesday, 20, Mar

Categories

Archives

  • February 2021
  • March 2020
  • November 2019
  • October 2019
  • March 2019
  • November 2018
  • October 2018
  • August 2018
  • June 2018
  • May 2018

About

We are a non-profit organization dedicated to saving the lives of newborns by advocating to prevent delays in the detection of MCADD through timely Newborn Screening, by raising awareness of the disorder through education, and to offering a community of support for those diagnosed with and affected by MCADD.

Please follow & like us

Facebook
Facebook
fb-share-icon
Twitter
Visit Us
Follow Me
Tweet
LinkedIn
LinkedIn
Share
Instagram

WHO WE ARE

  • Get to Know Us
  • Our United States Community
  • Our International Community
  • In Loving Memory
  • Press
  • Contact

WHAT WE DO

  • Our Mission
  • Our Vision and Objectives
  • Get Involved
  • Events
  • Blog

ABOUT US

Minutes Matter a non-profit organization dedicated to saving the lives of newborns by advocating to prevent delays in the detection of MCADD through timely Newborn Screening, by raising awareness of the disorder through education, and to offering a community of support for those diagnosed with and affected by MCADD.

LEGAL DISCLAIMER

The information provided by Minutes Matter – MCADD does not contain medical advice.  The medical information is provided for general informational and educational purposes only, and is not a substitute for professional medical advice. Accordingly, before taking any actions based upon such information, we encourage you to consult with the appropriate medical professionals.

Please follow & like us

Facebook
Facebook
fb-share-icon
Twitter
Visit Us
Follow Me
Tweet
LinkedIn
LinkedIn
Share
Instagram

© 2018 Minutes Matter - MCADD

Social media & sharing icons powered by UltimatelySocial