Scheff Boys Here! An Update From Miracle Kid Jaxon!
This week, we asked one of the kiddos you support, Jaxon Scheff, to write to you all. The strength of the kids you support is immeasurable but hopefully you can get a glimpse of the impact you are making on local families, through the perspective of a fourth grader.
Scheff boys here! YooHoo!
Imagine you are new parents. Your six week old baby is struggling to breathe and turning colors. You are so scared that tears run down your face as you call the pediatrician who immediately tells you to head to the Sanford Children’s Castle for admittance. (Quote from my mom and dad) This is how my story began on 7/9/2009. I was diagnosed with Pyriform Aperture Stenosis. My airway in my nasal structure is closed by bone. My nose doesn’t work and as a baby I didn’t know how to breathe through my mouth. I was suffocating. Fast forward to six months old. Imagine you are new parents. You are at the eye specialist office. The Dr. checks your baby’s eyes and tells you that your baby is blind with vision of 20/2000. This led to a diagnosis of Ocular Albinism. Imagine you are new parents. You go to the orthopedic specialist because your baby can’t crawl, pull up, or walk…another diagnosis of hip dysplasia. Imagine that every birthday you celebrate, another diagnosis is added. This is my life…too many diagnoses to list, unanswered questions, and participant in research at Sanford, CHOP, and the U of W hoping for answers in the future.
Hi! I’m Jaxon JonLee Scheff. I am a Children’s Miracle Network miracle. Without the amazing care at the Castle and the support of the community to the foundation, I would not be here making my mark on the world. My disabilities do not define who I am. I love life! I am very social (my mom made me like this so I wouldn’t be afraid of my specialty doctors and of surgeries). I am at ease standing up at podium speaking or showing my dance moves on the stage. Who doesn’t love a good floss and dab…..seriously? I am in 4th grade. I love playing Minecraft, riding bike, and bouncing in my trampoline. Typical kid right? This kid started saying in kindergarten that being a surgeon is in my future. I can’t wait to go to the University of South Dakota to become a surgeon and then give back to CMN. I want to be part of their village to help kids like me.
This is my brother Jeren JeromeLee Scheff. He is a Children’s Miracle Network Miracle. Our stories seem like you are caught in a repeat dream just changing the name of the child. Jeren’s story starts on 1/11/2013. Imagine you are adding a new baby boy to your family. Imagine he is struggling to breathe. Imagine the Dr. tells you that he is suffocating and won’t make it through the night. Jeren’s pattern of struggles, added diagnosis’s, surgeries, hospitalizations, and unanswered questions followed my story.
Hi! I’m Jeren JeromeLee Scheff. I am a Children’s Miracle Network Miracle. Without the amazing care at the Castle and the support of the community to the foundation I wouldn’t be here to tell my story. I love performing with my brother and showing my dance moves on the stage. Dabbing is defiantly my signature dance move mixed in with a little booty shaking and robot arm. I am in 1sth grade. I love playing Minecraft, riding scooter, and playing baseball. Typical kid right? Being a firefighter is in my future. I can’t wait to do fundraisers for Children’s Miracle Network to help kids like me know that anything is possible.
Jaxon here again. Both of us have a rare genetic condition with three missing genes on the X-chromosome. We are the only known humans with this combination. Life is not easy. We have to work really hard to see and to breathe but this doesn’t stop us…..we are go getters….. We are now known as The Scheff Boys.
One of our favorite parts of the Castle is having Cal the security guard greet us when we walk in! He ALWAYS has a HI five and sticker for us. We also love that the castle LOOKS LIKE A CASTLE and inside there are paths and hidden pictures you can search for. We love our specialists too. They take excellent care of our unique medical needs.
It is hard to put in words what CMN means to me. Our struggles have been life or death moments. We know struggle, we know pain, we know fear but most of all we know that Children’s Miracle Network is there to cheer us on, put smiles on our faces, and hold our hand helping us persevere. Nothing is too hard without a village behind you. That’s what they are…..our village……
The corona virus sucks! This pandemic makes me feel scared for miracles like Jeren and I. We both wake up with nightmares about the virus. Our family has to be shut down because we wouldn’t be able to breathe if the germs attack us. This is awful for someone who thrives on being social yet I know we can’t take a chance with our lives. Kids like us need you to know that you need to social distance, wear a mask, and wash your hands to protect us! If you do your part, we have a chance!
Jeren and I are keeping busy by writing letters to friends and family, connecting on technology, doing science experiments, planting a garden and of course listening to music and dancing! Check out updates from us on Jeren and Jaxon’s Journey on Facebook.
Thank you Jax and Jer for sharing a glimpse of your journey.
As a reminder, you still can purchase “Kids Can’t Wait” apparel throughout the month of May. If you are interested in learning more or purchasing one of these items, please click HERE. If you feel inspired to make a donation of ANY amount to Sanford Children’s Miracle Network, please visit our website or click the big red donate button above (if you are on a mobile device the donate button is available if you click on the hamburger button in the top left corner of your screen).
Want more info about COVID-19? Sanford Health is committed to the health of our patients, our employees and the communities we serve. The COVID-19 pandemic is a rapidly evolving situation. We will continue to provide the public with the most current COVID-19 information here.
Questions? Additional questions in regards to Sanford Children’s Miracle Network & Cure Kids Cancer? Reach out to Erin Sanderson, Program Director, at erin.sanderson@sanfordhealth.org.