Then we were told she would never see her 2nd birthday and when she did, she would never see her 3rd.

On her 3rd birthday her neurologist stopped making predictions. He told us that she is writing her own story and we are just along for the ride --- that’s still true today! It hasn’t been easy, far from it in fact. Emily is unable to walk, talk, sit up – she has the head/trunk control of a newborn and relies on us for 100% of her care. She has hydrocephalus, epilepsy, restrictive lung disease, GI issues that have led to 2 separate feeding tubes along with many other health issues. She has had well over 100 hospital admissions and been put under anesthesia dozens of times. We’ve almost lost her multiple times, most recently, a 10 minute cardiac arrest in January 2022 following anaphylactic shock in the operating room– but she fights.

As she grows, her needs grow.

Emily currently has a large, power wheelchair – which is amazing. But, because it is a power chair… it is BIG, HEAVY (hundreds of pounds) and not always a great option. The battery doesn’t last an entire day out of the house – which means that when we head out of state for appointments, we have to plan accordingly. We aren’t able to take longer day trips and it also limits summer activities that we would love for Emily to participate in like splashpads and water play! We are thankful to have insurance that helped cover the cost of her primary chair but that is the only one that they will assist with. Our current goal is a lightweight stroller type wheelchair which sounds like a small purchase but due to the support she needs, we are still looking at thousands of dollars. Accessibility and inclusion shouldn’t be so hard to attain – but for now, it is.

Any donations, your thoughts and prayers mean more than we can ever put into words. Our goal is and always has been to give Em the best care and support possible. Donations will go towards the purchase of a new wheelchair and any funds leftover will be saved and used for medical expenses not covered by insurance, parking/food/gas during hospital admissions (which are fairly frequent) etc…

Thank you so much for reading and taking a moment to learn about our sweet girl.