Love And Support For Emily Johnson
Donation protected
For those who don't know our story.
Our father’s name is Michael Portley, he had Hypertrophic Cardiomyopathy (HCM). HCM is a disease in which a portion of the heart muscle is enlarged without any obvious cause, obstructing blood flow leaving the heart. At the age of 29 he had a sudden cardiac death.
A child has a 50% chance of inheriting HCM from their parents.
My sister and I have been going to the doctors since I was 5 and she was 3, every 2-3 years making sure we haven’t developed HCM. But unfortunately, on June 7th, 2016 (age 22) during her pregnancy my sister Emily was diagnosed, putting her in a high risk pregnancy. This meant weekly and bi weekly maternity, maternal fetal specialist, and cardiologist appointments that she had to go to. She also needed to wear a life vest (external defibrillator) every day throughout the remainder of her pregnancy, and on November 1st, about a month after Nora was born, had the defibrillator put in.
About four months later her device was starting to sting/bug her. She found out her scar was too thin which could lead to an infection if her device were to break through. On February 27th she was scheduled for surgery from a plastic surgeon to get skin grafts over the pocket where her device is and a week later got a call from the hospital saying a culture test came back positive causing an anaerobic infection, forcing Emily to be on IV antibiotic every day for two weeks to get rid of the infection.
With all of her medical bills she was only able to take off about a month for maternity leave. On top of dealing with all of this my sister its taking care of a 5 month old baby, going to work, AND going to school. I would love to see her be able to focus on herself and not have to worry about paying for bills when she could be focusing on spending time with her new baby.
Anything helps and is much appreciated!
Thank you,
<3 Her Sister
External defibrillator
Before her skin grafts
After skin grafts
Our father’s name is Michael Portley, he had Hypertrophic Cardiomyopathy (HCM). HCM is a disease in which a portion of the heart muscle is enlarged without any obvious cause, obstructing blood flow leaving the heart. At the age of 29 he had a sudden cardiac death.
A child has a 50% chance of inheriting HCM from their parents.
My sister and I have been going to the doctors since I was 5 and she was 3, every 2-3 years making sure we haven’t developed HCM. But unfortunately, on June 7th, 2016 (age 22) during her pregnancy my sister Emily was diagnosed, putting her in a high risk pregnancy. This meant weekly and bi weekly maternity, maternal fetal specialist, and cardiologist appointments that she had to go to. She also needed to wear a life vest (external defibrillator) every day throughout the remainder of her pregnancy, and on November 1st, about a month after Nora was born, had the defibrillator put in.
About four months later her device was starting to sting/bug her. She found out her scar was too thin which could lead to an infection if her device were to break through. On February 27th she was scheduled for surgery from a plastic surgeon to get skin grafts over the pocket where her device is and a week later got a call from the hospital saying a culture test came back positive causing an anaerobic infection, forcing Emily to be on IV antibiotic every day for two weeks to get rid of the infection.
With all of her medical bills she was only able to take off about a month for maternity leave. On top of dealing with all of this my sister its taking care of a 5 month old baby, going to work, AND going to school. I would love to see her be able to focus on herself and not have to worry about paying for bills when she could be focusing on spending time with her new baby.
Anything helps and is much appreciated!
Thank you,
<3 Her Sister
External defibrillatorBefore her skin grafts After skin graftsOrganizer and beneficiary
Hannah Johnson
Organizer
Salt Lake City, UT
Emily Johnson
Beneficiary