We were established in February 2012 to provide support, spread awareness, and raise funds to assist 22Q families in the Kansas City Metro Area.
Heather Abbott
President/Treasurer
heather@amp22q.org
Where are you personally located? Blue Springs, MO
How many children do you have? 3
How has 22Q affected your life? My youngest son has 22q.
What inspired you to found AMP? When Gaige was born, we had never heard of 22q. We looked around for support and could not find anything local. We did not want other families to go through this alone so we started AMP.
What 3 goals do you hope to accomplish through AMP in the next 5 years?
For people to know what 22q is.
Have a physical support group in the area.
To donate items to CMH for children with 22q.
What are 3 words your closest friends and family would use to describe you?
Stubborn
Smart
Perseverant
What do you like to do in your free time? I enjoy doing crafts and reading books when I find time. I am also on the Family Advisory Board and NICU Family Staff Advisory Counsel at Children’s Mercy Hospital Kansas City.
Aaron Abbott
Director of Marketing/Fundraising
Aaron@amp22q.org
Where are you personally located? Blue Springs, Missouri
How many children do you have? 3
How has 22Q affected your life? My youngest son Gaige has 22q.
What inspired you to found AMP? When we found out that Gaige could have 22q we did what all parents would do and looked up as much information on the internet as we could. Almost all of the stories that we found were scary and worst case. We did not want to subscribe to that brand of thinking so we wanted to let people know that there are positive stories out there. We are very lucky to have such a strong and wonderful son so we wanted to give hope to others.
What 3 goals do you hope to accomplish through AMP in the next 5 years?
I hope that we can get the local 22q families together for a physical support group that offers hope and resources.
I want to provide some comfort to newly diagnosed families.
I would like to help educate the professionals around us so there are many more people sharing information about 22q and the amazing people it affects.
What are 3 words your closest friends and family would use to describe you?
Devoted
Honest
Empathetic
What do you like to do in your free time? I am kind of geeky. I like to try to
learn about technology and read. I love to spend time with my family.
Gaige's
Story
Here's a little about me and my son. He was very planned. My previous two children were premature. So, I started shots at 20 weeks to prevent premature labor. Around 20 weeks or so we found out his right kidney was cystic. Then around 23-24 weeks we found out there was a problem with his heart and he would probably need open heart surgery shortly after he was born. On November 30, 2010, I was induced and he was born at 2:41 pm. I got to hold him for less than five minutes before he was taken away to make sure he was stable. Within a couple hours they took him to Children's Mercy hospital. He was diagnosed with DiGeorge 22Q11.2 deletion. Two weeks later he had open heart surgery. He had an interrupted aortic arch and vsd repair. They did a great job. His heart now functions the same as everyone else. He was in a drug induced coma for almost two more weeks before they closed his chest. When they removed the drain tubes, he got pneumothorax, or air around his lungs. He also had major withdrawal from the pain meds. Six weeks after birth, he was able to come home on a ton of meds and an NG tube. Two weeks later, he went back in for feeding intolerance. We removed the fortification of his milk and he improved. None of his doctors would take responsibility for his NG tube, so we worked with him and removed it. He now eats fully by mouth. His right kidney does not function at all, but his left works fine. His left vocal cord is paralyzed with his right compensating. So, he does have to eat thickened fluids. We noticed he was not using his left hand/arm as much as his right. He had an MRI done and they found on the right side of his brain he has a brain malformation called polymicrogyria, which is the cause of his issues. We still have many appointments and weekly therapy. It is not at all what I imagined my life would be, but I would not trade my son for anything. I feel so fortunate to have all of my children. If I would tell parents anything it would be to follow your heart, the doctors don't know your child like you do.
When we found out that our son had 22q11.2, we felt so alone. There was not anyone who had been through this for us to talk to. Because of that, we started this charity so other families would not have to go through this journey alone. It has been a long road full of ups and downs and sacrifices, but if we can help one other family, it is all worth it.
Heather Abbott
President/Treasurer
heather@amp22q.org
Where are you personally located? Blue Springs, MO
How many children do you have? 3
How has 22Q affected your life? My youngest son has 22q.
What inspired you to found AMP? When Gaige was born, we had never heard of 22q. We looked around for support and could not find anything local. We did not want other families to go through this alone so we started AMP.
What 3 goals do you hope to accomplish through AMP in the next 5 years?
For people to know what 22q is.
Have a physical support group in the area.
To donate items to CMH for children with 22q.
What are 3 words your closest friends and family would use to describe you?
Stubborn
Smart
Perseverant
What do you like to do in your free time? I enjoy doing crafts and reading books when I find time. I am also on the Family Advisory Board and NICU Family Staff Advisory Counsel at Children’s Mercy Hospital Kansas City.
Aaron Abbott
Director of Marketing/Fundraising
Aaron@amp22q.org
Where are you personally located? Blue Springs, Missouri
How many children do you have? 3
How has 22Q affected your life? My youngest son Gaige has 22q.
What inspired you to found AMP? When we found out that Gaige could have 22q we did what all parents would do and looked up as much information on the internet as we could. Almost all of the stories that we found were scary and worst case. We did not want to subscribe to that brand of thinking so we wanted to let people know that there are positive stories out there. We are very lucky to have such a strong and wonderful son so we wanted to give hope to others.
What 3 goals do you hope to accomplish through AMP in the next 5 years?
I hope that we can get the local 22q families together for a physical support group that offers hope and resources.
I want to provide some comfort to newly diagnosed families.
I would like to help educate the professionals around us so there are many more people sharing information about 22q and the amazing people it affects.
What are 3 words your closest friends and family would use to describe you?
Devoted
Honest
Empathetic
What do you like to do in your free time? I am kind of geeky. I like to try to
learn about technology and read. I love to spend time with my family.
Gaige's
Story
Here's a little about me and my son. He was very planned. My previous two children were premature. So, I started shots at 20 weeks to prevent premature labor. Around 20 weeks or so we found out his right kidney was cystic. Then around 23-24 weeks we found out there was a problem with his heart and he would probably need open heart surgery shortly after he was born. On November 30, 2010, I was induced and he was born at 2:41 pm. I got to hold him for less than five minutes before he was taken away to make sure he was stable. Within a couple hours they took him to Children's Mercy hospital. He was diagnosed with DiGeorge 22Q11.2 deletion. Two weeks later he had open heart surgery. He had an interrupted aortic arch and vsd repair. They did a great job. His heart now functions the same as everyone else. He was in a drug induced coma for almost two more weeks before they closed his chest. When they removed the drain tubes, he got pneumothorax, or air around his lungs. He also had major withdrawal from the pain meds. Six weeks after birth, he was able to come home on a ton of meds and an NG tube. Two weeks later, he went back in for feeding intolerance. We removed the fortification of his milk and he improved. None of his doctors would take responsibility for his NG tube, so we worked with him and removed it. He now eats fully by mouth. His right kidney does not function at all, but his left works fine. His left vocal cord is paralyzed with his right compensating. So, he does have to eat thickened fluids. We noticed he was not using his left hand/arm as much as his right. He had an MRI done and they found on the right side of his brain he has a brain malformation called polymicrogyria, which is the cause of his issues. We still have many appointments and weekly therapy. It is not at all what I imagined my life would be, but I would not trade my son for anything. I feel so fortunate to have all of my children. If I would tell parents anything it would be to follow your heart, the doctors don't know your child like you do.
When we found out that our son had 22q11.2, we felt so alone. There was not anyone who had been through this for us to talk to. Because of that, we started this charity so other families would not have to go through this journey alone. It has been a long road full of ups and downs and sacrifices, but if we can help one other family, it is all worth it.