Sara Beth is a precious 1 year old baby girl who was diagnosed at 4 months old in October 2019. Her mother is her primary caretaker and her father works full time. His job has been flexible with him taking off for appointments and hospitalizations as needed, however he often is required to work weekends in order to make up for lost time. Sara Beth’s extended family support used to regularly include her maternal grandparents, however they live in Florida and are now unable to travel due to the recent COVID pandemic. Her paternal grandparents live nearby, but are also restricted in ways they can provide support because of the pandemic. Sara Beth’s daddy has been stepping up to provide more support, but this of course takes away from him working. The family has already met their out of pocket maximum through insurance and are unsure where that will leave them in paying for non-covered expenses. JUST TRYAN IT supported Sara Beth and her family with a grant to assist with their auto loan while the family focuses on Sara Beth’s care.
Update from mom March 2022
“Sara Beth is now 2.5 years old and 4 months into a new chemotherapy protocol. This chemo is causing hair loss but no nausea so we are grateful for that! She is doing better wearing her hearing aids (she has permanent hearing loss due to past chemo treatments) and several of her therapies want to cut her back to every other week, rather than weekly because of her recent developmental progress (she has 5 therapies/week plus weekly chemo right now so lots of appointments). She loves flowers, dogs, hearts, visiting “nurse-friends” at the hospital, and trying her best to do everything her 4-year-old big brother can do!”
-Sara Beth’s mother
January 2023 Update
“Sara Beth is 3.5 years old now and is on her first clinical trial drug. She is struggling with extreme skin sensitivity, including a constant battle with eczema and rashes. Unfortunately, she now requires limited sun exposure. Despite these limitations, she is doing well and has started preschool for two hours a day, four days a week so she can receive some of her therapy services there. She does a good job advocating for herself when either her hearing and vision loss affect her and I hope she continues to learn this skill as she is able to communicate more and more each year. We are so proud of the warrior she is!”
-Sara Beth’s mother