The Price Family

 

The Price Family

Brad and Amy,

Miles (4) , Giovanni (14 months), Liviana(3) , Aria (6)

This slideshow requires JavaScript.

Their journey so far…

September 2007-  Living in Wichita and 22 weeks pregnant with Liviana, Amy and Brad discover she has a congenital diaphragmatic hernia.  Survival rate is 50/50.

October 2007- The Price family moves to Omaha and start Liviana’s blog.

January 18, 2008- Liviana is born and whisked to the NICU.

January 22, 2008- At 4 days old, Liviana undergoes surgery to move her intestines, spleen, and stomach and repair her missing diaphragm.  During surgery, doctors discover a small ventricular septal defect and multiple hemivertibrae.  Liviana is a true miracle and fighter.  She goes home in 30 days, while recovery is usually 3 months.  And her small heart defect closes on its own.

May 2010-Liviana starts falling down more, losing her balance and her legs begin to take on a knock-kneed appearance.  The geneticist referred us to the orthopedic surgeon.

July 2010- First doctor dismisses her balance and leg issues.

August 2010- The geneticist decides an MRI is needed, but need insurance pre-approval

September/October 2010-While waiting for approval, Liviana’s condition worsens.  Amy insists on self-pay and, after sending a video of Liviana to the geneticist, is referred to a neurosurgeon.

November 16, 2010-Dr. Puccioni suspects a brain tumor and an MRI was scheduled for the following Monday.

November 17, 2010-Liviana cried on and off all morning.  She tries to stand up, but tells Amy her leg doesn’t work.  She goes to the ER.  At 8 p.m., she has an MRI.  By 9 p.m, the Price family is told Liviana has Leukodystrophy and will die. 

December 2010-Three weeks later, doctors confirmed Metachromatic Leukodystrophy.  And Giovanni had it too.  The doctor began conversations with a team of Italian doctors, and while Liviana was too far progressed, Giovanni would be accepted for treatment in Milan, Italy.

January 7, 2011- The Price family learns they have 5 days to get Giovanni to Italy.

January 27, 2011-Giovanni’s first surgery for a central line and cell harvest. 

February 13, 2011-Back to the hospital for another cell harvest and to begin chemotherapy, and then a reinfusion of his cells with the corrected ARSA enzyme.

Now, the family must wait for the natural course of things post chemotherapy and post transplant.  They are scheduled to come home in July, but are hoping for the end of May. They will need to return to Italy at least seven times in the coming months and years.

List of needed items for the Price family

-Living expenses in Italy: $2,800 x five months

-Maintain home in Omaha until they return: $1,300 x 3 months (A generous donation was made to pay March and April rent)

-Utilities to maintain home in Omaha until they return: $400 x five months

-Handicap accessible vehicle for the family

-Ongoing financial support for the medical expenses

-Legal/financial support for the family

-Childcare support to allow Amy to work her photography business