Everyone for Evie

I want to tell you a story about my friend Alyssa. We met while taking care of oncology patients whom were in the intensive care unit (ICU) at Children’s Hospital of Wisconsin (CHW). Alyssa has been a nurse practitioner at CHW for 4 years. Her career is focused on taking care of the sickest children in the state of Wisconsin. She has spent countless hours working in the ICU and has seen patients and their families through the darkest time in their lives.

Four years ago she married Tony, the love of her life. And three short years later they welcomed their first child. Sweet baby Evie. Their first few days at home with her were nothing short of magical. Those baby snuggles, the new baby smell, every adorable smile and coo… When Evie was about 1 week old their world came crumbling down around them. Evie’s Pediatrician called to tell them they needed to discuss the results of labs that were drawn just after she was born (this is called the newborn screen and every baby in Wisconsin has it done). Alyssa and Tony found out their daughter, their only child, had a life-threatening condition called severe combined immunodeficiency (SCID). This condition has led to innumerable number of doctors’ visits, lab work, and consultations with experts around the nation. SCID is truly a life-threatening disease. Evie’s immune system does not work at all. Her entire life has been in isolation. She has never been out of the house (except to see the doctor), she has yet to meet several of her family members and family friends. She has not gone on a walk in the park, a stroll through Target with her mama, nothing. A simple cold could kill her. A sneeze or runny nose around her could lead to Evie’s death. After months of appointments and consultations the treatment for Evie has come down to one option. She will require a bone marrow transplant in order to have a chance at life. She will undergo her bone marrow transplant at the age of 8 months. This baby girl has not even seen her 1st birthday…

I want you to imagine what her parents are thinking and feeling. Now, think about how Alyssa has taken care of the sickest kids in Wisconsin. She has seen and taken care of oncology and bone marrow transplant patients numerous times. She has seen the complications and pain/suffering these kids endure. The sad but true fact, is she has seen these kids not survive. She has helped families through the darkest times of their lives. And has done it with grace, compassion and pure dedication. Alyssa and Tony will now need to place their child, sweet baby Evie, into the capable hands of the doctors and nurses at CHW. Evie will endure surgical placement of IV’s. She will require sedation (will require a breathing tube down her throat) for multiple tests and procedures. She will be admitted to the oncology and bone marrow transplant unit at CHW to start chemotherapy. The goal of chemotherapy is to prepare her body to accept the bone marrow from another person. The process is terrifying. The chemotherapy will put her at even higher risk for life threatening infections. She will develop horrible sores all throughout her GI tract (from her lips all the way down to her bottom). She will require IV pain medication to deal with this. She will require IV nutrition because the sores will make it impossible for her to eat or drink anything. She will likely require oxygen to help her breath. She will most definitely end up in the ICU during her treatment. The same unit that her mama works on and has taken care of patients whom were also undergoing BMT. There is no way to sugar coat this. The risk of death for baby Evie is real. She will require IV antibiotics to fight infections. She will require blood and platelet transfusions to keep her alive. She will be in the hospital for long, long time. When she is finally discharged from the hospital she will then have multiple appointments a week. They have such a long, painful road ahead of them. 

This page has been set up to help offset the costs Tony and Alyssa will be accruing to care for their daughter. There will be medical bills upon medical bills. There will be lost wages as they take off of work to care for their baby. Let’s come together as a community, shower this family with love and support. Please consider donating money to ease some of the burden this family will undergo. Consider sharing this page on your own personal social media accounts, emailing family/friends. Nothing is too small. 

Believe it or not, Tony and Alyssa are already planning ways to give back to the immunodeficiency and BMT program at CHW. We are already discussing how to plan a fundraiser in the future. All funds that are raised and not used for the care of Evie, will be donated to CHW to help future patients with immunodeficiencies. These two human beings truly amaze me. They are already looking to the future and planning ways to give back. Please, truly consider donating. Nothing is too small.