Menkes Friends

Share your Story!

Contact Us

   
 

 
 

Giovanni was born prematurely on February 27, 2006 weighing 3lb. 11oz and was 19 inches long. Giovanni spent 5 weeks in the NICU (neonatal intensive care unit) because his low birth weight, oxygen and temperature instability. The only explanation giving to me at that time was that everything was normal for being born premature.

My motherly instincts encouraged me to question the doctors for more answers for I felt there were something more to his condition. A couple months after taking our baby home I observed him changing colors after his feedings. We took him back to the doctor but he said that it was probably acid reflux, a common symptom associated with premature infants.

After several trips to the emergency room for fevers and apnea (breathing stops) I asked for a transfer to the Medical Children’s Hospital in Salt Lake City, Utah.  We received the diagnosis of Menkes Kinky Hair Disease almost immediately. I knew then our lives would completely change, but having Giovanni made it worth every second.

Even with all the medical interventions such as an NG tube that was eventually replaced by a gastrostomy tube, three seizure medications, copper injections and continuous oxygen…Giovanni continued to decline in his health. For the last two days of his life he was seizure free and looked very peaceful. On his last day, he was lying bedside be on the sofa and kicked me with his leg so I picked him up to hold him close. As I looked into his sad little eyes he took his last breath.

We have learned to live life “Un Dia a la Vez” (One day at a time) because of our sweet earth angel. He loved music, to be cuddled with Grandpa, and looking at bright lights! Giovanni earned his angel wings at birth and learned to fly with them on July 24, 2007.

Giovanni Xavier Sanchez
February 27, 2006 – July 24, 2007
We will never forget him…

Proud Parents,
Liliana & Cosme


español

Posted: October, 2008

 
© 2007 The Menkes Foundation