Rare blood disorder
Donation protected
www.haea.org 
My baby is diagnosed with hereditary angioedema(HAE) when she was 2 years old. Kinley experienced her first attack when she was just 6 months old. At that time no one knew what was wrong. She is in and out of the ER and has seen multiple doctors.
Finally when Kinley was two her pediatrician ordered blood work which confirmed that she had a rare but potentially life threatening blood condition called hereditary angioedema. 1 out of 3 die from esophageal swelling.
Kinley needs to be infused and watched to make sure that the swelling doesn't progress. This year alone Kinley has 7+ attacks. I have missed work to be with her. It is emotionally, physically and financially stressful.
We are working on getting Kinley "maintenance" medication. This would be medicine that I will learn to infuse (IV) Kinley myself every three days for the rest of her life. Her illness can not be out grown.
My baby is diagnosed with hereditary angioedema(HAE) when she was 2 years old. Kinley experienced her first attack when she was just 6 months old. At that time no one knew what was wrong. She is in and out of the ER and has seen multiple doctors. Finally when Kinley was two her pediatrician ordered blood work which confirmed that she had a rare but potentially life threatening blood condition called hereditary angioedema. 1 out of 3 die from esophageal swelling.
Kinley needs to be infused and watched to make sure that the swelling doesn't progress. This year alone Kinley has 7+ attacks. I have missed work to be with her. It is emotionally, physically and financially stressful.
We are working on getting Kinley "maintenance" medication. This would be medicine that I will learn to infuse (IV) Kinley myself every three days for the rest of her life. Her illness can not be out grown.
Organizer
Jenn Maginn Ross
Organizer
Hopatcong, NJ
