Support Everly through NAPA Center Therapy

Our daughter, Everly, was born healthy on March 24th, 2019. However, as milestones were needing to be met, we had noticed she was becoming delayed in many areas. We were referred to multiple hospitals to figure out what was going on. At six months old, Everly was diagnosed with Aicardi Syndrome.

Aicardi Syndrome is a rare syndrome that affects only 4,000 girls worldwide. It is a random genetic mutation that is unknown as to what causes it. One of the biggest set backs with Aicardi Syndrome is epilepsy. Everly averages 6-12 seizures a day lasting anywhere from 30 seconds to ten minutes, due to having a partial corpus callosum and a deformed right brain. Missing those parts of her brain makes it hard for her to learn how to sit up, crawl, walk, eat, talk and so on. As she is getting older, her seizures seem to be more frequent and intense.

In March, 2021, we went to the Mayo Clinic in Rochester to have Everly evaluated to see if she would be a candidate for brain surgery. Unfortunately, the doctors determined that they would have to remove too much of her brain which would leave her with little chance of improvement, and would potentially decline her current state. So, as of now, we are trying different medications to help keep her seizures under control. Everly had a feeding tube placed in September, which is her main source of receiving nutrition currently.

Unfortunately, there is no cure for Aicardi Syndrome and the average life expectancy is estimated between 8-18 years old. Everly attends physical therapy, occupational therapy, and speech therapy several days a week. We applied for an intensive therapy program located in Denver, Colorado. This program is difficult to get in, and lucky for us, Everly was accepted into the program. According to NAPA Center, “Many children gain more progress towards their goals in three weeks of intensive therapy than they do in a whole 12 months of ongoing traditional therapy.”

At NAPA Center, Everly will be completing intensive therapy for four hours a day, five days a week, for three weeks. She will be doing two hours of therapy in a Neurosuit while working with physical and occupational therapy. She will then do an hour of feeding/speech therapy and an hour of Dynamic Movement Intervention. Everly is blessed with this opportunity to be able to attend NAPA. As we are so grateful to be accepted into this amazing therapy opportunity for Everly, it is also very costly and is not covered by insurance. We will be paying out of pocket for therapy, as well as traveling and everything that comes with our three week stay out of state.

Although Everly is faced with hardships and multiple hospitalizations, she is beautiful, happy and a blessing from God. Everly was handed an unfair life but we will keep fighting everyday. She has taught us so many things, but most of all - true love. She continues to let her little light shine. Thank you to everyone who has prayed for us through these difficult times and continues to pray for us. All donations will be used towards Everly’s therapy and care. We appreciate all the prayers, love and support as we are gearing up to head to Denver in hopes of Everly gaining new skills. ❤️

Much love,

Aaron, Mikayla and Everly