Hi my name is Ileana Giordani, President and Research Coordinator of the international Foxg1 Foundation. I have a twelve year old daughter, Sofia, and three year old twins, Isabella and Giovanni. When the twins were three months old, we began to notice Isabella wasn’t hitting the same milestones that Giovanni was. She couldn’t hold her head up like Gio, and while Gio would stare at us, Bella would just gaze right through us like we weren’t there. It was like she was blind- and now we know that in a way she was. When Bella was four months old, we started physical therapy for her head which was constantly leaning to the right. Her therapist noticed what I had for months- that she was different. She had our doctor to refer us to a Neurologist and from there a Geneticist and the testing began. At our next appointment, Gino and I were sitting in the Genetic councilor’s office and he gave us the results. He said that Isabella had something like Rett Syndrome but not Rett Syndrome. We looked at each other and were confused- what did that mean? The Doctor explained that her blood work had comeback positive for a mutation of the Foxg1 gene. He went on to say Bella would not walk, talk, sit or stand, and will always be mentally disabled. Our world sank. How does it feel to have your child be diagnosed with foxg1? The fear of the unknown, the anger, blame, hurt, disbelief and failure as a parent -all these feelings and more filled me when I told that our child has foxg1. The next few months were Hell on Earth. The inconsolable crying, failure to thrive, plus the no sleep for days, weeks and months and years took a toll.
So as we were attempting to adjust to our new life, our search for information began, but everywhere we went- nothing. We even went to Italy for answers, but still nothing. If it wasn’t for the internet, there would still be nothing. After repeated searches, we stumbled upon a support group on Facebook. Ah, the joy that We Are Not Alone felt amazing. To be with other parents that are going through and dealing with the same things we are- what a relief! As the months progressed and we all continued to have the same issues, I felt something had to be done; I approached Heather Norwood and asked her if she would be interested in joining me to create International Foxg1 Foundation, and she said yes!! I figured if others have done this why not us? We then asked the other four original members of our support group to join us. They agreed, and our Board of Directors held our first meeting on October 4, 2012, and we haven’t stopped since!
We recently turned to that same support group for help as Bella began to have screaming fits at night accompanied by a startling jump, like someone had snuck up on her and shouted boo. She was also having these staring spells during the day. We posted some questions to the other parents, and based on their replies we went to see Bella’s neurologist. Sure enough, she was diagnosed with seizures- yet another thing to learn how to deal with. Luckily they have been controlled by medication so far, and she’s actually sleeping through the night more frequently! This is exactly why we formed IFF; to give others the support and someplace to turn to for information that we didn’t have. Now here we all are, so happy that we are going to help so many parents and letting them know they are not alone.
We will find answers and hopefully someday a cure.
Hi my name is Ileana Giordani, President and Research Coordinator of the international Foxg1 Foundation. I have a twelve year old daughter, Sofia, and three year old twins, Isabella and Giovanni. When the twins were three months old, we began to notice Isabella wasn’t hitting the same milestones that Giovanni was. She couldn’t hold her head up like Gio, and while Gio would stare at us, Bella would just gaze right through us like we weren’t there. It was like she was blind- and now we know that in a way she was. When Bella was four months old, we started physical therapy for her head which was constantly leaning to the right. Her therapist noticed what I had for months- that she was different. She had our doctor to refer us to a Neurologist and from there a Geneticist and the testing began. At our next appointment, Gino and I were sitting in the Genetic councilor’s office and he gave us the results. He said that Isabella had something like Rett Syndrome but not Rett Syndrome. We looked at each other and were confused- what did that mean? The Doctor explained that her blood work had comeback positive for a mutation of the Foxg1 gene. He went on to say Bella would not walk, talk, sit or stand, and will always be mentally disabled. Our world sank. How does it feel to have your child be diagnosed with foxg1? The fear of the unknown, the anger, blame, hurt, disbelief and failure as a parent -all these feelings and more filled me when I told that our child has foxg1. The next few months were Hell on Earth. The inconsolable crying, failure to thrive, plus the no sleep for days, weeks and months and years took a toll.
So as we were attempting to adjust to our new life, our search for information began, but everywhere we went- nothing. We even went to Italy for answers, but still nothing. If it wasn’t for the internet, there would still be nothing. After repeated searches, we stumbled upon a support group on Facebook. Ah, the joy that We Are Not Alone felt amazing. To be with other parents that are going through and dealing with the same things we are- what a relief! As the months progressed and we all continued to have the same issues, I felt something had to be done; I approached Heather Norwood and asked her if she would be interested in joining me to create International Foxg1 Foundation, and she said yes!! I figured if others have done this why not us? We then asked the other four original members of our support group to join us. They agreed, and our Board of Directors held our first meeting on October 4, 2012, and we haven’t stopped since!
We recently turned to that same support group for help as Bella began to have screaming fits at night accompanied by a startling jump, like someone had snuck up on her and shouted boo. She was also having these staring spells during the day. We posted some questions to the other parents, and based on their replies we went to see Bella’s neurologist. Sure enough, she was diagnosed with seizures- yet another thing to learn how to deal with. Luckily they have been controlled by medication so far, and she’s actually sleeping through the night more frequently! This is exactly why we formed IFF; to give others the support and someplace to turn to for information that we didn’t have. Now here we all are, so happy that we are going to help so many parents and letting them know they are not alone.
We will find answers and hopefully someday a cure.