Erica and her son Kylan both have Jacobsen Syndrome.

Hi there! My name is Erica and I am 34 with JS and my sons name is Kylan he is 4 with JS and HLHS (hypoplastic left heart syndrome.) My husbands name is Paul. We live in Ohio.

Kylan has had two open heart surgeries and a few heart catherizations. He has his last open heart surgery coming up. I found out I had JS after Kylan was born and his blood wasnt clotting properly. They did a bloodwork and realized he had JS and then the doctors asked to get me tested and sure enough I had it.

I have a full time job as a hotel logistics coordinator booking hotel rooms for pilots all over the US and some international. I graduated form college with a degree in Associate of Applied Business specializing in Hospitality Management. Kylan attends pre school 4 days a week and receives OT, PT and speech. He is doing very well. He loves going to school. As a family we like to go on little getaways.

On Mondays daddy takes Kylan to Chik-Fil-A after school because its daddy day and mommy does the same on Thursdays after school because its mommy day. This is just a special thing we started this year after days that we pick him up from preschool. Lala which is grandma picks him up on the other two days he attends school until mommy or daddy gets off work. We also love to go to dinner as a family. In the summer we like to talk walks with Kylan and go to the park. Mommy also takes Kylan to the pool. He loves going to the pool. Kylan loves playing with other kids his age too.