Get Carter-Boo Mobile
Donation protected
This is my adorable and one of a kind nephew, Carter, who I want to help get a wheelchair for. He's also known as Car-Car and Carter-Boo. Carter is so unique that less than 150 people in the entire world share the same condition as him. Mister blue eyes here, was born with an extremely rare genetic disorder they call FOXG1 syndrome. This is Carter's' story.
My older and closest sister Ashley, who always swore up and down she would never have children mind you, and her long time boyfriend Kenny became pregnant in early 2012. I've never seen my sister as excited as I did the day she told me she was pregnant. For the next 9 months that sister of mine was a basket case first time mom. I'm pretty confident she ready every book written on becoming a parent, as well as took every vitamin and mineral recommended to maintain a healthy pregnancy. She ate perfectly, slept perfectly, and looked perfect during her entire pregnancy. This drove me crazy because we decided I needed to have a baby too so our kids could be close enough in age to be inseparable just like we were. We'd go do something together and being a second time mom, I'd be sitting there pregnant with my McDonalds and Soda while she ate her perfect portion of proteins and water to ensure her child was the epitome of perfection. Her perfect pregnancy ended on December 1, 2012 when Carter Calderone was born. He was adorable. His bald head and big blue eyes, all of her hard work during her pregnancy seemed to pay off. The first 6 months of Carter's life seemed to be pretty normal for an infant. He cried, he ate, he stayed up late, he was definitely a baby. After his 6 month mark my sister began to notice Carter was acting still like an infant. He wasn't siting up, he had no intentions of trying to roll over, and really couldn't even hold his head up. On top of all of that he was inconsolable. And I don't mean let him cry it out inconsolable, I mean 5-8 hours of straight screaming to the point I didn't know how my sister was doing it. That was when he doctors appointments and tests began. It took over a year of my sister having no answers as to how to fix her bouncing baby boy, and I'm sure believing that she did something wrong when she was pregnant that could have caused it, to get a hint of what was off with him. A year of worry. A year of guilt. A year of no sleep. A year of taking him to any type of therapy she could google to make him feel better. We were all begining to lose hope. Finally a doctor said it seemed like the soft spots on his head were closed, it was a start. This lead to getting a full gene analysis which finally lead to in the last 6 months he was offically diagnosed with FOXG1 syndrome.
In a nutshell what this means for Ashley and Carter is that Cater will always need his mommy.They will have their good days which may sometimes outweigh their bad days. From what we're told he will possibly get around of his own, he will possibly be able to communicate, he will possibly be able to control his muscles, he will possibly feed himself. The future is unknown with so few cases. He will however have seizures often, have a mom that will do anything to make him comfortable, have a cousin 3 months younger than him who is obsessed with him, and have a family that will keep searching for answers and treatment for this rare disorder.
This Go Fund Me is to help get Carter mobile. He's always cooped up in a stroller, which he's getting a bit big for now, or laying down. So I'm determined to get him a little wheelchair and any other special needs item to help make my sisters life easier and Carter's life more enjoyable. Any donation whatsoever is appreciated. FOXG1 does not have a known cure and does not have much funding. In the entire patent support group here are only 224 members, that isn't even double the 140 cases that exsit. This month Carter is also going to be taking a vist to Stanford. He will also be attending Katie's Rettsyndrom Clinic, where he will be their very first FOXG1 child. We're optimistic and our hopes are high that Carter will help find a way to treat this disorder so that no other families have to see their children this helpless and frustrated.
My older and closest sister Ashley, who always swore up and down she would never have children mind you, and her long time boyfriend Kenny became pregnant in early 2012. I've never seen my sister as excited as I did the day she told me she was pregnant. For the next 9 months that sister of mine was a basket case first time mom. I'm pretty confident she ready every book written on becoming a parent, as well as took every vitamin and mineral recommended to maintain a healthy pregnancy. She ate perfectly, slept perfectly, and looked perfect during her entire pregnancy. This drove me crazy because we decided I needed to have a baby too so our kids could be close enough in age to be inseparable just like we were. We'd go do something together and being a second time mom, I'd be sitting there pregnant with my McDonalds and Soda while she ate her perfect portion of proteins and water to ensure her child was the epitome of perfection. Her perfect pregnancy ended on December 1, 2012 when Carter Calderone was born. He was adorable. His bald head and big blue eyes, all of her hard work during her pregnancy seemed to pay off. The first 6 months of Carter's life seemed to be pretty normal for an infant. He cried, he ate, he stayed up late, he was definitely a baby. After his 6 month mark my sister began to notice Carter was acting still like an infant. He wasn't siting up, he had no intentions of trying to roll over, and really couldn't even hold his head up. On top of all of that he was inconsolable. And I don't mean let him cry it out inconsolable, I mean 5-8 hours of straight screaming to the point I didn't know how my sister was doing it. That was when he doctors appointments and tests began. It took over a year of my sister having no answers as to how to fix her bouncing baby boy, and I'm sure believing that she did something wrong when she was pregnant that could have caused it, to get a hint of what was off with him. A year of worry. A year of guilt. A year of no sleep. A year of taking him to any type of therapy she could google to make him feel better. We were all begining to lose hope. Finally a doctor said it seemed like the soft spots on his head were closed, it was a start. This lead to getting a full gene analysis which finally lead to in the last 6 months he was offically diagnosed with FOXG1 syndrome.
In a nutshell what this means for Ashley and Carter is that Cater will always need his mommy.They will have their good days which may sometimes outweigh their bad days. From what we're told he will possibly get around of his own, he will possibly be able to communicate, he will possibly be able to control his muscles, he will possibly feed himself. The future is unknown with so few cases. He will however have seizures often, have a mom that will do anything to make him comfortable, have a cousin 3 months younger than him who is obsessed with him, and have a family that will keep searching for answers and treatment for this rare disorder.
This Go Fund Me is to help get Carter mobile. He's always cooped up in a stroller, which he's getting a bit big for now, or laying down. So I'm determined to get him a little wheelchair and any other special needs item to help make my sisters life easier and Carter's life more enjoyable. Any donation whatsoever is appreciated. FOXG1 does not have a known cure and does not have much funding. In the entire patent support group here are only 224 members, that isn't even double the 140 cases that exsit. This month Carter is also going to be taking a vist to Stanford. He will also be attending Katie's Rettsyndrom Clinic, where he will be their very first FOXG1 child. We're optimistic and our hopes are high that Carter will help find a way to treat this disorder so that no other families have to see their children this helpless and frustrated.
Organizer and beneficiary
Sara Cherry
Organizer
Modesto, CA
Ashley Calderone
Beneficiary