Gio

Gio's Story

My sweet boy Giovanni aka Gio now 11 years old was born full-term, weighing 9 lbs, 9 ounces. Boy was he a big boy. He went into respiratory distress and was placed in NICU for 2 weeks. While pregnant we found out he had enlarged cisterna magna (fluid in the back of his brain), but that was all. We were told he would have some development delays and to continue seeing his neurologist which we did. Gio reached every milestone on time and was doing great. He crawled, walked and started talking which was great and we were so happy. Around 3 1/2 we noticed Gio wasn't saying as many words or sentences that he would normally say, noticed his stomach was becoming enlarged, he wasn't responding to us as much and had ear infection after ear infection.

We were referred to a genetics doctor out in San Diego and so the testing began. At 4 years old, on March,16,2017 Gio was diagnosed with Hunter Syndrome and our lives forever changed. Never ever hearing the words Hunter Syndrome, we were lost and confused, but we did what needed to be done for our Son and started getting everything into place. On June,1,2017 just 3 months after being diagnosed Gio started Infusions once a week. We would drive 2-3 hours to the infusion center once a week. That was such a hard time for Gio, especially being poked over and over in his arms because his veins were so hard to find. Thankfully on March,16,2018 Gio had a port placement which has been life changing. 3 years of driving back and forth Gio was finally approved for home infusions which has been the best thing for our Giovanni. 

Giovanni attends many physical and occupational therapy appointments on top of many Specialist he sees. He does have medical trauma due to many hospital stays and many many pokes, but he is such a strong boy.

One big challenge we currently have is up until October 22,2022 Gio walked and ran everywhere. He walked 100% tippy toed so his Orthopedic Doctor recommended surgery to lengthen his tendons. Well that surgery did not end up well. He is no longer walking and has developed complex regional pain syndrome, neuropathy, and restless leg syndrome. It has definitely been a struggle, but Gio does the best he can to get around crawling. 

Giovanni is the best boy. He has the best smile and laugh. He tends to be a homebody, he loves being in the comfort of his home and for Mommy to spoil him all day. He also has the best siblings that just love and adore him to pieces. Gio does love Disneyland so we take multiple trips throughout the year for him. 

Gio is our world, he is the most amazing boy.