For Hannah, Nick, Miles, & Isla

If you have been following Hannah and Nick’s journey lightly or thoroughly… here is an official update on where things currently stand.

When you're dreaming of creating a family some day, you visualize so many beautiful moments...

The love you share with your partner and the excitement for your future together. Friends and family excitedly rubbing a soft pregnant belly as they patiently await for baby to arrive. Arranging your home in preparation to endure long nights as peacefully as possible. Tiny toes. Laughter. Kitchen dance parties. Siblings running barefoot through the yard together. After dinner walks. Holidays.

You simply never imagine bringing one of the most precious things into the world only to be met with the reality that some of these memories may never be made.

On March 31st, we welcomed sweet Isla Blue Caskey into the world- one month premature. On May 6th, Isla was taken to the ER after several doctor’s visits and was ultimately rushed to Vanderbilt Children’s Hospital.

Initially, it was thought that she was suffering from hypoxia, a common experience for premies as they continue to develop from being thrust into the world! However, now, after nearly two months of being in and out of the ICU, we have learned that in conjunction with bouts of apnea, Isla has an extremely rare genetic mutation: KCNQ2 Encephalopathy Non-epileptic Myoclonus.

There are so many unknowns about KCNQ2 Encephalopathy Non-epileptic Myoclonus. The cases in children that have been diagnosed with this show varying degrees of learning and physical disabilities. Most cannot talk and eventually do start to have seizures at some point in their life.

There is no delicate way to state that, in addition to developmental uncertainty, Isla is at a high risk for shortened life due to her inability to breathe on her own.

Nick and Hannah have navigated the uncertainty, elongated hospital stay, and overwhelming emotions as an incredible team. They have an amazing support system around them that has allowed Miles to experience a normal life during their two-month stay away from home.

As they transition and become equipped with what they need to leave Vanderbilt, Hannah and Nick’s highest hopes are to take leaves-of-absence from work in order to cherish some time as a family making memories together, meeting family Isla may never otherwise meet, and hugging each other tight while they know they can. One of the ways this can happen is if Hannah and Nick are able to raise enough money to take a leave in order to accomplish this. Money raised will go toward their family being able to travel together, keep things in order at home with rent, food, and other monthly expenses, and, ultimately, being able to be a mom and dad to Miles and Isla together in a way that they were not able to experience during their maternity and paternity leave.

Thank you so much for taking the time to read this and thank you so much for considering being a part of their journey as a family together through monetary support. It’s definitely not easy to ask for, but it is nearly the only way they will be able to accept help at this time.

If you are able to contribute but prefer not to do it through GoFundMe, you are able to Venmo Nick and Hannah @Nick-Caskey.