Steve and Bethany Juhl are an amazing couple! They are young, vibrant, caring, compassionate, God-fearing people. They love family and are very involved with their church. After the Lord, their kids are some of the most important things in their lives. They have three wonderfully healthy children: Jackson, age 6; Jacey, age 4, and Jayla, age 2. When they discovered they were pregnant with their fourth, they were ecstatic! There was never a doubt in their minds that this child would be another healthy addition to their perfect family.
At her 20 week routine sonogram, the doctor discovered that Jetson's brain was not forming correctly. After the doctors kept a close eye on Jetson for the duration of the preganacy and after birth, they diagnosed him with Semi-Lobar Holoprosencephaly and Hydrocephalus. With the second worst diagnosis in this category, Steve and Bethany's lives came to a devastating halt. The prognosis was even worse; Jetson will never walk, talk, probably never eat on his own, and he may not hear and see very well. The doctors told the couple that Jetson will function as an infant for the duration of his life and need constant care, and that duration could be days to weeks or months to years. Thinking they heard the worst news, the doctors said that Jetson needed shunt surgery and the obstacle would be for him to come out of surgery and to start breathing on his own again (20% of infants with this diagnosis don't recover).
We serve a Miracle-Working God and this family, strong in their faith, God has been answering their prayers! Jetson made it through surgery and started breathing on his own sooner than the doctors expected. He is off of his feeding tube and is feeding safely from a bottle (something the doctors didn't think he would do). He was even able to move to a crib, which introduced a little normalcy to his life. Jetson has a long journey ahead of him but he is making miracle baby steps each day.
How You Can Help
Steve works as a Media Specialist for St. Joseph Christian School and Bethany is an Elementary School Counselor. With all of the special appointments they had to go to, all through the pregnancy, both of them are out of leave time to take. Which means, any time they take off now, is unpaid. Steve returned to work this week, hesitant to leave his newborn, but knows he has to provide for his family. Bethany is staying at the Ronald McDonald House, across the street from Jetson. So, their two income family has now dropped to one. However, their monthly expenses didn't drop. I am hoping to raise enough funds for them to survive on for two to three months. Their one income will have to pay their mortgage, utilities, school tuition, daycare, gas to and from the hospital (it's an hour away), groceries, food for the family at the hospital (Ronald McDonald House provides some, not all, meals) and any little thing that might pop up along the way and realistically, that isn't possible. This doesn't even include the medical bills that have started accruing. There is no word on how long the doctors think Jetson will have to spend in the hospital; it could be months.
Jetson has already wowed so many of us with how much he has overcome! He is truly a miracle! Please help my sister and her family; I can't think of any other family more deserving! You can follow Jetson's journey in more detail here:
- Kelly Starr
- Linda Dillon
- Janelle Kelley
- Genu Zapala
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