☺️ I’m Allie, Katie's sister and Kyle's sister-in-law. Anyone close to Katie and Kyle knows that they are beautiful, kind, and amazing people who would do anything they could to help someone in need. They have two beautiful children - Easton, the coolest four year old little boy and best big brother; and Everly, a happy 19 month old little girl with an infectious smile!

Evy has had quite the medical journey as she was born with a rare, progressive genetic disorder, Bryant-Li-Bhoj Neurodevelopmental Syndrome or also known as H3F3A. There are only 4 known cases worldwide with Evy’s specific gene variant, leaving the future very much unknown. Evy is also diagnosed with hypomyelination and associated thinning of the corpus callosum, Cerebral Palsy, multi focal epilepsy, severe obstructive and central sleep apnea resulting in BiPAP dependence, dystonia, delayed visual maturation, G tube dependence and global developmental delay. Despite all of Everly’s medical setbacks, she conquers every battle with force and determination! Evy has touched the hearts of many, and our hope is to give her every opportunity we can to experience the world in every way.

Evy has been accepted into an Intensive Model of Therapy at NAPA Center and All Kids Are Perfect PT. This model creates a customized program for children with neurological disorders. Because of the intensive style of treatment, evidence supports significant developmental progress in the 1-3 week timeframe that children would otherwise achieve in 6-12 months of traditional therapy.

Due to the rarity of H3F3A with the first case diagnosed in 2020, there are no treatment options and very little research out there. When Katie asked the Doctor (who founded the condition) how they could help promote myelin growth, her response was “keep doing what you’re doing, continue with all of the therapies”.

Katie and Kyle have truly done everything in their power to allow Evy to flourish and thrive. As you can imagine, having a medically fragile baby takes up all 24 hours in a day which makes it difficult for Katie to work her job as an occupational therapist (also, how incredible that Evy has her own therapist mommy to support her!). Our hope is to support them any way we can financially to help support the cost of the intensive, travel and lodging for their 1-3 week stay. While the intensive therapy is an incredible opportunity, it unfortunately is not covered by insurance. Evy deserves every opportunity presented in her path and I want to help them in any way possible. Everly is heading to All Kids Are Perfect in North Carolina at the beginning of June and Napa Center in Boston this fall/winter. We can’t wait to see the progress she makes!

Thank you so much to those who are able to donate! If you are unable to donate that’s okay, we ask that you share please! Your support means the world.