Azrael was born March 31st, 2008. She was almost 5 weeks premature, and healthy in every way; so we thought. On April 4, 2008 we received a call from Doernbecher Children’s Hospital which forever changed our lives. We were told to immediately stop breast feeding. Azrael was diagnosed with a rare genetic disease called galactosemia. A DNA test found her gene to be linked to an Ashkenazi Jewish gene defect, although galalctosemia can be found in other ethnic groups as well. Our happiness and joy of having a newborn baby quickly turned to fear and sadness. We were told most galactosemics do not make it to the first weeks of life. Every day and week Azrael continued to amaze us. Each day, week, and month we celebrated her life and continue to do so everyday. We were truly blessed to have Azrael in our lives and are dedicated to finding a cure or treatment for galactosemia.
Azrael was recently diagnosed with seizure disorder which is common in galactosemics. She was also recently diagnosed with paranasal sinus disease, a pineal cyst on her brain, and white matter of the parietal lobes in the right and left lobes of her brain. Azrael also has fine motor and speech delays, and has lost complete ovarian function.
Despite Azrael’s many challenges, she remains happy and loving. Azrael’s smile can light up a room. She enjoys swimming, preschool, and ballet at Portland Jewish Academy. She is in an environment with many caring professionals allowing her the opportunity to focus on who she is, not what she is not.
We celebrate the miracle of Azrael’s life everyday and felt compelled to make a difference to all children suffering from galalctosemia.