Etta Mae's Journey to Health and Happiness

To preface my name is Marisa Ebenstein and I am the organizer. I am the Aunt to baby Etta and started this for my sister and her husband who are struggling to make ends meet. Thank you to anyone who made it this far.❤️

A word from Etta’s Momma;

”Dear Friends, Family, and Kind Strangers,

 We are reaching out with hopeful hearts and a deep sense of urgency to share the story of our precious daughter, Etta Mae. Etta was born on August 10, 2022, and has already shown incredible strength and resilience in her young life. She spent the first four months of her life in the car being driven to appointments 5 days a week 45 minutes away from home for jaundice treatments, therapies and chiropractic treatments. She had her first surgery at 8 weeks old to revise fourth degree (most severe) tongue, lip and double buccal cheek ties. But her troubles didn’t stop there. Shortly after her first birthday, in October of 2023, Etta contracted Covid and landed herself a stay at Cardinal Glennon Children’s Hospital. During that stay she became septic and lost a considerable amount of weight. Upon discharge her bloodwork indicated that she had little to no immunity, but that made sense to us considering how sick she had just been. So, we were sent home with the sentiment that after a week or so, her levels would come back up. They did not. They still have not.

Since October 2023, Etta Mae has been hospitalized several times due to a rare condition called benign neutropenia, which compromises her immune system and makes her vulnerable to frequent and severe illnesses. Even now, July 2024, her levels are all still at her baseline and there is no indication that they will get better anytime soon - Especially with another cold and flu season ahead of us. Last year during cold and flu season, from October 2023 - April 2024, Etta wasn’t allowed to leave the house besides to go to doctor’s appointments and the hospital. I wasn’t allowed to leave the house, since I am her primary caregiver. We missed out on holidays, family gatherings, events, parties, etc. This cold and flu season will be more of the same. More hospital visits, more isolation, more family events missed, more sickness and more unknown.

 Etta Mae is receiving the best care at the Mercy Children's Cancer and Hematology Center in St. Louis. They secured a donor at the beginning of the year to cover the entire cost of the most extensive genetic testing and counseling services for their patients, and Etta was one of them! The dedicated team there has been nothing short of amazing, but the cost of her treatments and hospitalizations has been overwhelming. Despite our best efforts, and the help of family and friends, we currently owe a considerable amount of debt. In fact, due to the outstanding balance of medical bills that we have, we are given an estimate of what her emergent visit will cost every single time that we take her to be seen, and then we are charged a percentage upfront, so as you can imagine, our credit cards have a hefty balance as well.

 As her mother, I am unable to work because of the unpredictability of Etta Mae's condition and the need to be by her side constantly. This has put an immense strain on our family's finances, making it difficult to cover not only her medical expenses but also our everyday living costs. Her father, Kyle, works overtime every chance he gets and picks up any on-call shifts he can, but we just can’t get caught up. I spend countless hours, days and weeks in the hospital with Etta by myself while he gets updated via text and pictures at work. Then when he gets off work for the day, he drives an hour straight to the hospital in his work clothes, stays until I can get caught up on enough sleep for the night shift rotation, and then drives home to shower, catch a few hours of sleep himself and do it all again the next day.

 Etta still has routine checkups with her pediatrician and hematologist, in addition to the regular emergency room visits and hospital stays. We have a referral out for an immunologist and are hopeful that once we meet with them, we will have a more defined path forward.

 We are humbly asking for your support to help us through this challenging time. Your generous contributions will go directly towards paying Etta Mae's medical bills and ensuring that she gets the care she needs to continue fighting this condition. Every little bit helps and brings us one step closer to giving Etta Mae the healthy, happy future she deserves.

 From the bottom of our hearts, thank you for your kindness, prayers, and support. We are deeply grateful for any help you can provide.

 **How You Can Help:**

1. **Donate:** Any amount, no matter how small, will make a difference.

2. **Share:** Please share this campaign with your friends, family, and social networks.

3. **Pray:** Keep Etta Mae in your thoughts and prayers for her continued strength and recovery.

Thank you for being a part of Etta Mae’s journey and for helping our family during this difficult time.

  With heartfelt gratitude, 

      

     The Schuettes “