Campaign Story

My name is Alison. I’m married to my best friend Tim. Our daughter’s name is Evelyn. We call her Evie for short.

One week after Evelyn was born we found out that she had pulmonary and aortic stenosis, which meant her arteries were too tiny and making her heart work over time. Ultimately, she had to have open heart surgery at 6 months old and luckily it was a success! She’s a healthy, happy girl about to turn 4!

Which brings me to why I’m here. After the surgery we had genetic testing done to find out why her arteries were so tiny. Her doctor initially thought she had Williams syndrome. When the test came back negative he referred us to a generic counselor who confirmed she didn’t have Williams syndrome. What she has is a mutation in the ELN gene in her DNA. In her case it effected the arteries in her heart.

In order to continue growing our family, we need to use IVF. With IVF we can find and eliminate the ELN gene mutation and the possibility of passing it down to a future baby, avoiding another major surgery on a tiny baby.

Any help will be so appreciated by my family! Thank you ❤️