Amy was born in October 1987. I was raised with 6 siblings and had been married 3 years and desperately wanted kids. Here was this beautiful baby girl! But things were not right…First hint- I went home without her. She had been sent into ICU for failure to thrive. Balloons on the mailbox, but no baby:( The first year was non stop walking the floors with a screaming child, lack of meeting milestones, and then came the seizures. The day a doctor told us Amy was profoundly retarded and would never walk is a nightmare no one wants to repeat.
But repeat I did – in 1991 Ben was born. At his 3 month check up when they measured his head and there was no growth…I knew I was once again getting some really bad news! Those were some very dark days in our household! Two years prior I had given birth to another beautiful baby girl…to this day she is perfect!
We’ve done the best we could, with the help of family and a wonderful school system, and a strong relationship between my husband and I. Our middle child has been our life line to normalcy, and without her, I’m not sure if I’d be as strong as I am today!
Amy and Ben are two very beautiful children that demand our constant attention and affection. Life has been a roller coaster of emotional ups and downs. The diagnosis of Foxg1 came as we searched for answers for our middle child who had fallen in love and wanted to wish for a “normal life” with her potential future husband. We were over the moon to give her an answer, and one that put her into the pool with the rest of society…she wasn’t a carrier!!!
We are still attempting to grasp the idea that we have an identity, and are joined by over 115 other beautiful families across the globe. I feel like the Grandmother of the group, and accept the duty to extend hugs to all!We’ve done the best we could, with the help of family and a wonderful school system, and a strong relationship between my husband and I. Our middle child has been our life line to normalcy, and without her, I’m not sure if I’d be as strong as I am today!
Amy was born in October 1987. I was raised with 6 siblings and had been married 3 years and desperately wanted kids. Here was this beautiful baby girl! But things were not right…First hint- I went home without her. She had been sent into ICU for failure to thrive. Balloons on the mailbox, but no baby:( The first year was non stop walking the floors with a screaming child, lack of meeting milestones, and then came the seizures. The day a doctor told us Amy was profoundly retarded and would never walk is a nightmare no one wants to repeat.
But repeat I did – in 1991 Ben was born. At his 3 month check up when they measured his head and there was no growth…I knew I was once again getting some really bad news! Those were some very dark days in our household! Two years prior I had given birth to another beautiful baby girl…to this day she is perfect!
We’ve done the best we could, with the help of family and a wonderful school system, and a strong relationship between my husband and I. Our middle child has been our life line to normalcy, and without her, I’m not sure if I’d be as strong as I am today!
Amy and Ben are two very beautiful children that demand our constant attention and affection. Life has been a roller coaster of emotional ups and downs. The diagnosis of Foxg1 came as we searched for answers for our middle child who had fallen in love and wanted to wish for a “normal life” with her potential future husband. We were over the moon to give her an answer, and one that put her into the pool with the rest of society…she wasn’t a carrier!!!
We are still attempting to grasp the idea that we have an identity, and are joined by over 115 other beautiful families across the globe. I feel like the Grandmother of the group, and accept the duty to extend hugs to all!We’ve done the best we could, with the help of family and a wonderful school system, and a strong relationship between my husband and I. Our middle child has been our life line to normalcy, and without her, I’m not sure if I’d be as strong as I am today!