Keira's "Redefining Normal" Trip
Donation protected
Imagine the first time you ever blew out your birthday candles was the day you turned 6 years old. Then, imagine later the same year, you were finally able to speak your first words in Kindergarten. These are just two of the accomplishments my daughter, Keira, has made in recent years, and they are milestones marked on a very long road. Now a fiery, petite redhead, who is as curious, adventurous, creative, and intelligent as any other little girl her age, Keira was born with a rare genetic syndrome called Nager Syndrome (Nager acrofacial dysostosis).
Keira is like any other little girl with a few difference. Over the few years Keira has had her trach removed, she is learning to talk, as well as eat. Cheeseburgers have become her new favorite food and she loves to sing along to Taylor Swift songs. These are things we’ve dreamed of and seeing her do these things, well I can’t describe the feeling that over comes me.
Nager Syndrome causes physical anomalies to the face and limbs. Keira was born with some variation of most of the anomalies associated with Nager Syndrome, such as, shortened forearms, missing thumb, underdeveloped thumb, fused elbow, moderate hearing loss, and the biggest anomaly: a severe recessed lower jaw, which was fused due to a condition called boney ankylosis. Just after birth, Keira had to have a tracheotomy to manage her airway, as well as a g-tube placed for feeding. Those were the first two surgeries in what would become a long list of surgeries to help correct her thumbs and her jaw. To date Keira has had 16 surgeries.
Although we were told it was about a million to one chance of having a child with Nager’s, no one could tell us the prevalence of it per birth. Thanks to the Foundation for Nager and Miller Syndrome, it is know that there is approximately 200 documented cases worldwide. Because there are so few cases, Keira has never been able to meet anyone like her. This is where we need help!
In June the biennial conference for The Foundation for Nager and Miller Syndrome will be held in New Orleans. Families from all over the world come together at this conference to meet one another, share experiences, learn new things (the last conference was about the discovery of the Nager gene), and most important it is a time when kids of this syndrome can see they are not the only one. It is an experience Keira needs.
We are asking for help so Keira can go and meet other kids who are like her. Keira may be a strong kid but never being able to meet someone like you can take a toll, even on a child. Keira has seen pictures of other children with Nager’s and she gets so excited, “Mom their like me!” she says to me. I have asked her if she wants to meet them and it is always the same “Yes!”
Please help us give this experience to Keira! Any little bit will help and thank we thank you in advance!
Keira is like any other little girl with a few difference. Over the few years Keira has had her trach removed, she is learning to talk, as well as eat. Cheeseburgers have become her new favorite food and she loves to sing along to Taylor Swift songs. These are things we’ve dreamed of and seeing her do these things, well I can’t describe the feeling that over comes me.
Nager Syndrome causes physical anomalies to the face and limbs. Keira was born with some variation of most of the anomalies associated with Nager Syndrome, such as, shortened forearms, missing thumb, underdeveloped thumb, fused elbow, moderate hearing loss, and the biggest anomaly: a severe recessed lower jaw, which was fused due to a condition called boney ankylosis. Just after birth, Keira had to have a tracheotomy to manage her airway, as well as a g-tube placed for feeding. Those were the first two surgeries in what would become a long list of surgeries to help correct her thumbs and her jaw. To date Keira has had 16 surgeries.
Although we were told it was about a million to one chance of having a child with Nager’s, no one could tell us the prevalence of it per birth. Thanks to the Foundation for Nager and Miller Syndrome, it is know that there is approximately 200 documented cases worldwide. Because there are so few cases, Keira has never been able to meet anyone like her. This is where we need help!
In June the biennial conference for The Foundation for Nager and Miller Syndrome will be held in New Orleans. Families from all over the world come together at this conference to meet one another, share experiences, learn new things (the last conference was about the discovery of the Nager gene), and most important it is a time when kids of this syndrome can see they are not the only one. It is an experience Keira needs.
We are asking for help so Keira can go and meet other kids who are like her. Keira may be a strong kid but never being able to meet someone like you can take a toll, even on a child. Keira has seen pictures of other children with Nager’s and she gets so excited, “Mom their like me!” she says to me. I have asked her if she wants to meet them and it is always the same “Yes!”
Please help us give this experience to Keira! Any little bit will help and thank we thank you in advance!
Organizer
Natalie Slaughter Robinson
Organizer
Oklahoma City, OK
