Willows Journey

As most of you are aware, my Daughter Majerle, and her husband Easton just gave birth to a beautiful baby girl. Willow May was born on 3/22/24. Soon after her coming into this world we discovered that our biggest fears were a reality. Willow was diagnosed with Spinal Muscular Atrophy. SMA is what our dear little Mayble passed away from at the age of 3. SMA is a disorder affecting the motor neurons that control voluntary muscle movement. Without treatment, infants diagnosed with SMA Type1, will probably will probably never be able to sit up unassisted, and require a feeding tube. Most will not survive more than 2-3 years.

Our family fought this battle 8 years ago when there were no treatments available that were approved. Our little Mayble passed away on May 16th, 2019. Today we have a new found hope that our Willow will be able to have a chance at life with a new treatment that is on the market.. Zolgensma (gene therapy). With this treatment and hundreds of other medical needs that will needed, there are significant medical expenses. Because this is only one of three treatments they can charge you a ridiculous amount of money. Even after insurance the financial burdens will be extremely outrageous. If you can please help this darling family so that Willow can get the help she needs to be able to live her best life. Our family has been so thankful for all of you who have shown reached out to us and shown your love and support..