Campaign Story

My husband and I want to have the chance at being the amazing parents to a healthy baby that we know we can be. We want a chance at having a happy family. We lost our 8 month old daughter on September 1, 2021. We lost her due to a very rare disease called Krabbe Disease. The state we live in, Nebraska will not test for this disease at the newborn screening. We spent months finding the right doctor and many hospital trips to find a diagnosis and to find a doctor willing to listen to our very big concerns for our daughter. She was diagnosed at 7 months old and passed away a month later. In her case and the severity of the disease on her body she did not qualify for any treatments. With the mutation my husband and I carry we can no longer have children naturally since we will always sit at a 25% chance of having another baby with Krabbe and that baby/babies having a more severe case than our daughter.

The hardship this brought on my husband and I, is something no parent should have to go through. The hospital stays, moving from doctor to doctor and all the medication that our daughter was on to ease her pain put a financial strain on our family. Our daughter was put into physical therapy, occupational therapy and swallow therapy for a few months before we got her diagnosis. Due to her special needs, our daughter was 100% tube fed and needed care around the clock and since we couldn’t afford for an in home nurse this 24/7 care was mainly on me so my husband could go to work for us. With all of her medications I was up every 2-3 hours giving her medication, filling her feeding bag and waking up anytime she needed oral suction or any sort of help. With all of this I was averaging only 2-3 hours a sleep for about 5 months straight. With our daughters needs it was hard to ask family for help as certain things only my husband and I knew what to watch for our how to handle a situation so one of us was always around.

Once we received the diagnosis about our daughter on August 3, 2021 we made the very tough decision to not proceed with any medication that would prolong her life. We found out that our daughter had stage 3 Krabbe Disease.We put her on hospice care and received medication that would ease her pain. During this process we had to sign papers no parent should every have to sign and make decisions on our childs life that no parent should go through.

We have chosen to proceed with IVF, as we can test our embryos for the disease and specific mutation my husband and I carry to ensure we have a healthy rainbow baby. We want another chance of having our own child again. To see our child resemble us and our daughter.Throughout this whole process we have had family continually supporting us, standing by our side and grieving with us. We have their support as we have decided on IVF. We want to have a healthy baby and to have that life we have prayed for. Me especially as a mom, I want to be able to embrace being a stay at home mom again. To be able to hold my own child again and spend time with them. For my husband to have a fair chance at fatherhood and being able to work his normal hours and come home to our family. We want to experience the simple things in life with our baby, like going out to breakfast as a family or going grocery shopping together.

We thank you for reading our story.
-Logan, Taysha and our sweet angel baby Willow Mae.