Colton and Caleb Mayo Clinic Trip

Hello, my name is Jessica Wright. My husband, Casey, and I are parents to three boys: Carson (age 8), Colton (age 6), and Caleb (age 4). When we learned that we were expecting our first child, we were over the moon and so in love with our little boy.  Just as any parent does, we dreamed of his sweet perfection and how wonderful life would be as a little family of three.  Carson was about a year old when we began to realize that he wasn’t like other babies.  He didn’t do the things other babies did.  He was late reaching all his early milestones.  At 1 years old, he wasn’t crawling and he didn’t make sounds while he played as other babies did.  We were heartbroken.  At just a year old, our little boy began his medical journey with countless therapists and medical appointments.

Fast forward 7 years and we now have 3 wonderful boys, all which  require intense therapy services and see medical specialists weekly. The boys have many diagnoses, some well know and some not, that combined make our family situation one of the most complex and rare that our doctors tell us they have ever seen. They all have autism and are globally delayed. They struggle with ADHD and other mental and developmental disorders that make it difficult for them to process and cope with daily life. Carson has a feeding tube and Parkinson’s Disease. Two of the boy’s have agenesis of the corpus callosum, which means they are missing the part of the brain that allows the left and right side of the brain to communicate with each other. This affects their ability to learn simple, daily tasks such as walking and dressing. They have a combined 29 medical providers. Most of their needs can't be met in Alaska due to the lack of pediatric providers.  It has been a long, hard road to say the least!

 

After years of seeking services in Alaska, we reached out to 47 children's hospitals across the nation and there was only one that said they could help with everything. We had the opportunity to take Carson to the Mayo Clinic. At the end of this trip, the doctors there were able to figure out that Carson has an enzyme disorder that makes it so his body does not absorb many medicines. The Mayo Clinic was able to help us find medicines that work. There were also able to connect us with multiple services that have improved Carson's ability to eat and to interact with peers. For the first time ever, Carson has been able to make and keep friends, dress himself, and function close to normal! Now we want to seek these same services for our younger two kids, who are still struggling with little improvement from local doctors.  The Mayo Clinic will help Colton and Caleb have less pain, less problems with their physical growth, and less emotional outbursts.  But we need help! Our insurance does not cover the medical appointments. We spent over $30,000 out of pocket for Carson to go to Mayo Clinic. Now we are taking two kids. The Mayo Clinic is hard to get into and we don’t want to lose this opportunity to help our kids. The Mayo Clinic requires that we pay $5,000 upfront per child before they will see that child. With two kids, that is $10,000. Please consider donating to this cause to help improve the quality of life for our kids.