Our Tiny Super Hero

Hello friends. My name is Anna and I am asking for help on behalf of my Goddaughter Keira Riley.

Keira is 3 years old and has an extremely rare genetic neurological disorder called Aicardi syndrome. She was diagnosed at the age of 3 months. Aicardi Syndrome causes Keira to have many seizures daily. Despite treatment, she sometimes has hundreds of seizures in a single day.

To date, Keira has been hospitalized 32 times. The longest seizure she has had was 2 hours and 40 minutes long. It landed her in the PICU (pediatric intensive care unit). It was incredibly scary for her family, and we are so fortunate that she survived.

With all she has been through she still continues to smile and be the Tiny Superhero she is. She loves being with her family, pets and going to the My Sunshine School to see her friends (accompanied by her nurse).

Keira is on a medical ketogenic diet and is fed through a g-tube. She takes 10 medications daily, 3 times a day. In addition, she has rescue medications when needed for relentless seizure activity.

Her home has essentially become an acute skilled nursing facility which is filled with necessary medical equipment such as a medical grade pulse ox, suction machine, oxygen condenser, portable oxygen tanks, an array of therapudic equipment and LPN/RN nursing care. Dispite this fact, Keira's family has worked incredibly hard to provide a comfortable "home" environment for Keira and not the feel of a hospital facility.

To accommodate Keira’s physical development and growing needs, her home needs to be renovated to allow for handicap accessibility. She is unable to walk or talk, though she does communicate through facial expressions and sounds. When she is happy we get her infectious beautiful smile. When she is unhappy we get grunts and scowels. She is getting bigger and it has become increasingly difficult for her parents to carry Keira up multiple flights of stairs to her bedroom.

In addition to the home renovations, Keira needs to have a sleep safe bed. A "sleep safe bed" is a special bed which is equiped with motion detection, and is fully encased in mesh. Due to her seizure activity, Keira must be monitored 24/7. Due to her hypotonia, Keira has trouble sitting up on her own though it does not keep her from trying. She will sometimes fall forward, backwards or to the sides. The mesh will help protect her at all times, allowing her Moms to take a moment to use the bathroom while knowing Keira is safe.

The majority of the renovations necessary to Keira's home are not covered through insurance, waivers or grants. The renovations will be very costly. We are asking for help and any donations of any amount.

Thank you so much for your support. It will continue to allow Keira Riley to stay home with her family in a loving and safe environment. ❤️