Help Support Jubilee and Judah's Journey

Hello! We are the Staehlin family and have four children. Our twins, Jubilee and Judah, are four years old. They were born premature at 25 weeks via emergency C-section and spent three months in the NICU. It has been amazing to watch them grow up. From the outside looking in, knowing what they have gone through - Jubilee bilateral grade 4 brain bleeds, Judah right sided grade 4 brain bleed and left sided stroke - they are doing remarkably well. Jubilee is brilliant and loves to learn anything and everything as she sees her older sister in school learning. She loves to cook and exercise with mom, make up songs, singing all day long, and play the piano during family jam sessions. She is a girl who loves to get all “dolled up” and wear “dangle earrings”. Judah has an unquenchable passion for all things music and his favorite instruments are the drums and guitar. His favorite YouTube music inspiration are the Good News Guys. He loves to ride his strider bike, play with his marble tower, and will let you know he loves all things orange. We thank God for the miracles that they are and all that He did and is doing to sustain them. We will never take for granted the miracles they are and the gift we have been given by getting to see them flourish these last 4 years. It is difficult to write about their current health needs because they are nothing compared to the prognosis we were given while in the NICU. But here we are, reaching out because we are facing some challenges and want to give them every opportunity possible to succeed.

Jubilee has cerebral palsy affecting her right side. We noticed her struggles starting in her right hand when she was a baby, but in the last year and a half, she began to experience tightness and toe walking in the right foot only. It was a journey to help her learn to walk, so we are so thankful that she can do so. The abnormal gait however has caused pain, imbalance, and daily falls. She has come so far with therapy helping her right hand and fine motor development. That said, she does have limitations that affect her ability to advance in using her right hand properly. We have been working with PT and OT since she was a baby and it has been critical for her right hand and leg strengthening. Although she has been in a brace for the last year with ongoing therapy and daily stretching, the tightness in her right leg continues to worsen. Her neurologist/CP specialist has referenced the potential need for casting and Botox in the future if she continues to worsen. Unfortunately, these therapies only treat the symptoms and are temporary with modest help. Her prognosis is concerning for chronic pain, lifelong disability, contractures and surgery, and secondary problems from her daily falls. For our family, this information is life altering and emotional knowing Grace’s oldest brother’s battle with CP.

Judah’s challenges are not as obvious as Jubilee’s. He does have fine motor difficulty with his hands and does therapy as well. For example, he struggles to be able to do “thumbs up” or hold up three fingers at a time. In addition, it seems there is a disconnect in processing information needed to teach him new things and then being able to translate it into action. Because of this, he becomes frustrated very easily and gives up because of how challenging it seems for him to understand what is being said. With school coming soon, it is likely he will struggle to keep up. We do not have a formal diagnosis for Judah, however, his MRI does show scarring on his brain, just like Jubilee. And after further research, his symptoms are consistent with neurodevelopmental delays.

We have been extremely prayerful seeking the Lord for his guidance as He is the ultimate healer and provider. He has proved himself faithful to the twins and our family time and time again. We believe He led us to learn about a functional neurotherapy clinic in Iowa that does intensive therapy for up to three weeks for kids who have exactly what Jubilee and Judah are experiencing. There are testimonials regarding children having success with these therapies and tremendous breakthroughs. We have consulted with the doctor and are scheduled to go out over spring break to start the first week of intensive therapy. This program will provide cutting edge therapies to help heal the scarring in their brains and thus provide life-changing results. It is no small cost to do these therapies, however. The combined cost for them to complete 3 weeks of therapies and then us parents continue the therapy at home is going to hover around $60,000.

We covet your prayers and support as we embark on this journey with them.