Karing for Kennedy

If you have ever met Alyssa or Nick, you would know that they selflessly give their daughter, Kennedy, the world and more.

A few months after Kennedy was born, she wasn't meeting her milestones which prompted further work up to determine why. When she was around 8 months old, they received answers. Kennedy was diagnosed with a deletion of her 17th chromosome. Along with her chromosome deletion, she was diagnosed with microcephaly, lissencephaly, hypotonia, congenital brain malformation and subcortical band heterotopia. Since Kennedy’s diagnosis, she has had multiple doctor visits, procedures done, and hospital stays. She is currently g-tube dependendent, has to have intermittent straight cathing throughout the day to help drain her bladder, and on medications to help decrease her seizure activity.

As of last week, Kennedy unfortunately was admitted to a nearby Children's hospital for pneumonia and rhinovirus. She was initially started on what's called high flow to help maintain her oxygen status. The next morning, Kennedy was no longer tolerating the high flow oxygen and was requiring intubation. During the intubation process, Kennedy's heart rate and blood pressure dropped extremely low to where the hospital staff had to resuscitate her. The next day, Kennedy was no longer tolerating the conventional ventilator, and it was time for a higher level ventilator. She is currently on a "VDR" ventilator that is a higher functioning ventilator. Kennedy has remained sedated and paralyzed to help maintain her respiratory status. She is under constant care by the amazing healthcare staff in the pediatric ICU.

At this time, Kennedy is in a marathon fighting every day like she has since the day she's been born. She is the strongest little girl who has dealt with every obstacle that has laid in her path.

As for Alyssa and Nick, they have not let Kennedy's diagnosis stop any of them from living their best life. They promised each other at the beginning of Kennedy's diagnosis that they would not live in the fear of the unknown and enjoy each and every moment possible with Kennedy, and they have all done just that.

At this time they have had an outpour of support and people wondering how they can help. Not that they would ever ask, but we've started a go fund me to help offset the cost of parking, gas, food, and hospital bills for them. As stated before, this is Kennedy's marathon. Please refer back to her go fund me for updates or her instagram that Alyssa had created to spread awareness about life with lissencephaly @karingforkennedy

Thank you in advance for everyone's thoughts, prayers, donations, and kind messages. The DiMarco family truly appreciates each and every single one of you!

Instagram link below!

KaringForKennedy