hi everybody , I first want to say thank you for even going out your way to read about Gios story…

Giovanni is our 7m old baby who was diagnosed with a very rare genetic disorder. It is called “ Mowat - Wilson Syndrome” . There are only about 5 cases in the state we live in and 500 cases in the world. This is a genetic disorder that most doctors haven’t even heard about. We have been learning more and more about it everyday .

Due to his genetic disorder he was born with no spleen , so any sickness can be deadly too him.. a simple cold/cough can mess his body up bad and cause his oxygen to drop into a danger zone.

Gio also has pulmonary valve stenosis , he has had 2 heart procedures . He has a stent placed in his PDA valve and had a balloon dialation of his pulmonary valve, with also 2 heart murmurs. He will need another heart procedure.

As he’s getting older we realized he can’t see too well , he will need an eye procedure to help fix his vision …

Gio sees a cardiologist , eye doctor , physical therapy , birth to 3 , occupational therapy , neurologist , pediatrician , urologist , and infection disease doctor.

We are in doctor appts numerous times a day , numerous times a week just to make sure he gets all the help he can possibly get…

only one parent can work because the other has to be home with him to make sure he takes all his medication he needs numerous times a day.

I am constantly having to leave work early for appts, or just randomly because we have to rush him to ER.

if anybody is willing to help out , we’d really appreciate it … we are a one income household , with work hours because cut numerous times .

We started the process to receive social security for him but have yet to receive any answers , and his insurance doesn’t cover all medications

thank you again so much