This is Monroe Everly. She is soon to be turning one, a milestone itself. Her story begins around 2 months of age when she had her first seizure. To be honest, they believe she actually had her first seizure at 6 days old; something her pediatrician wrote off as “newborn twitches”. Every day since her first seizure she has fought through her setbacks. Around 4 months old, doctors told her parents that she will most likely never live past 8 months of age, even with an unknown diagnosis.

Since December 2020, Monroe has received countless blood draws, Cat Scans, MRI’s, EEG’s, genetic testing, multiple spinal taps, and even a deep infusion process, which is an extremely heavy sedation. She has spent more days and nights in a hospital crib than most adults experience in their lifetime. She is currently on 4 different seizure medications, some heavy hitters, to help control her episodes. She does have some relief but goes through her daily living with some challenges.

Monroe is globally developmentally delayed, which simply means she cannot perform the same movements & tasks that a typical 11 month old can. She is still not able to hold her own head up, reach for toys, play independently, feed herself, or speak. This presents challenges for her parents, to be able to care for her, as typical seating chairs, bath seats and high chairs do not work. Monroe will need special equipment such as standers, adaptive strollers, tumble chairs and bath positioners as she continues to grow. Most of these aren’t covered by insurance, or insurance will only cover two of her chairs. As you can imagine these special pieces of equipment are not cheap.

As Monroe grows, so do her everyday needs. Currently she is on a special ketogenic diet, which is administered through her nasogastric feeding tube. She is fed through a feeding tube every three hours and gets her blood sugars and ketones tested twice daily. All of her medications need to be converted to pill form, which her parents need to split, crush, and mix with water to administer through the tube, a major task in itself. Monroe’s needs have become so extensive that Chelsea, Monroe’s mom, had to leave her full time position to stay home and care for Roe. This has presented a financial strain on the family as medical bills keep piling up.

Monroe has had multiple emergent rides via ambulance to the local hospital; her condition is so fragile that an emergency can happen in a blink of an eye. In addition to traditional medication needs, Monroe needs extra therapy support with PT, OT, Vision, & Speech. Her parents have also sought out some holistic therapies that are not covered by insurance but have shown tremendous improvement for Monroe, which they wish to continue.

Despite not having an answer as to why she is having seizures, Monroe has shown her family how tough of a fighter she is. To celebrate Monroe on her 1st birthday, The Williams Family has created a team called Super HeROE and they would like to invite you to #WalkToEndEpilepsy on 10/16/21. While Monroe and her family greatly appreciate your support and donations, this foundation also holds a special place in their hearts; therefore, in addition to covering Monroe's medical costs, a portion of your donation here will be gifted to the Epilepsy Foundation in Monroe’s name. Your donation will go towards spreading awareness, increasing seizure safety for schools & day care centers, support an epilepsy camp and most importantly find a cure to end this disease!

• 1 IN 26 people in the United States will develop epilepsy at some point in their lifetime.

• ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.

• 6 OUT OF 10: Number of people with epilepsy where the cause is unknown.

If you would like to join Monroe’s walk, we are asking for a $35 registration fee, per person, separate from your Go Fund Me donation. This fee will include a team shirt and cover other costs for planning the walk. To sign up for the walk, please Venmo your name, shirt size & fee (per person) to @K_Rudolf . You will then receive the particulars of when and where after registering through the teams email. If you are registering more than one person, please provide the additional sizes needed. We will do our best to accommodate everyone's shirt size with the supply we have. If you do not have Venmo, you can use the contact button below and we will set up payment, the best way possible. This event can be in person or virtual, but if attending the walk, masks are recommended for the safety of Monroe.

We hope you will join us in this fight to END Epilepsy!

Walk Details: will be sent after registration

Shirt Sizes:

Youth Small

Women’s Small, Medium, Large & XL

Men’s Medium, Large, XL, XXL

The family thanks you for all your support, love, prayers and positive thoughts during this time. We hope to see you at this event.