Support for Shane's Medical Journey

Hello, my name is Marlie, and I'm raising money to help support my six-year-old nephew, Shane, in his ongoing medical treatments.

Shane has a yet undiagnosed issue that causes chronic constipation (see more in SHANE'S STORY below,) and he and his mom, Katie, need to travel to Seattle Children's Hospital for a special test called a colonic manometry. This test is done at only six locations in the country, and he has been on the waitlist for about six months, so we're excited that he can finally get seen.

Unfortunately, due to the special nature of the test, the procedure is "out of network" for Katie's insurance which means it will cost up to $2800 out-of-pocket each time, and, since the test is to monitor changes in the color, it will need to happen again in 6-12 months. In addition, Katie will need to cover the expenses of getting to and from Seattle, a place to stay, food, etc. As a single mom and special education teacher, Katie could use some financial support for this and his ongoing treatments.

I’m looking to raise $3000 for Katie and Shane. This money will cover the costs of the trip, as well as some of the out-of-pocket costs of the procedure itself.

Any funds raised beyond what is needed for this round of tests will go into a designated account for use for Shane’s ongoing medical needs, including future tests, supplies for his daily treatments (which range from $100-250 a month), and copays for his regular doctor visits.

Shane’s ongoing medical journey is stressful enough for him and for the family, without even considering the expenses. I hope that together we can offer some financial support so that Katie can concentrate on supporting Shane emotionally.

Thank you for donating, supporting, and sharing!

SHANE'S STORY

When Shane was about three months old, he began experiencing chronic constipation that would leave him backed up for days at a time. Although the doctors believed that he would grow out of the issue, it only got worse as he got older.

He began seeing a pediatric gastroenterologist when he was about a year and a half old and began the medical journey that he's been on for the past five years.

He began a daily regimen of laxatives as well as dietary changes. When backed up for more than five days, he required suppositories and/or enemas multiple times a day. At one point, he was unable to poop for almost two weeks. If the backup went too long, he had to have an in-patient clean-out at the hospital. These clean-outs last from 3-5 days, and he cannot eat anything solid and has to be hooked up to an IV for fluids and a tube that goes down his nose directly into his stomach to administer a solution to break down all of the solids. As you can imagine, these hospital stays were scary and difficult.

During this time, he also underwent many tests and procedures to determine the cause of the issue. Unfortunately, nothing provided answers.

Throughout this period, Shane dealt with daily pain from bloating and pressure, continued weight gain, and the inability to do a lot of physical activities. His grownups (Mom, Grandma, Grandpa, and me) had to be on constant alert for temperature changes, increased pain, or other signs that he could now have an intestinal blockage.

Thanks to the mom of a friend at Shane's preschool, we learned about a procedure that would allow us to clean out his colon every night to keep it empty and reduce the pain and pressure, and in March of 2023, Shane had surgery to put in a cecostomy tube (c-tube). Each night, Katie flushes a saline solution through Shane's C-tube and breaks up any solids in the colon. The process takes about an hour, and Shane has to sit still on a toilet the whole time.

Within a month of getting his tube and beginning the nightly treatment, Shane had lost 20 pounds of poop weight and has continued to lose weight until he is now at a healthy weight for his age and height. Although the treatment is time-consuming and somewhat uncomfortable, the tube has been a game-changer for his quality of life and ability to participate in things, including a weekly ninja class at a local gymnastics school.

We're so happy about the progress, but we also recognize that the C-tube treatment only addresses the symptoms, not the reason for constipation. As the next step of the diagnosis process, Shane needs to have a colonic manometry test done at the end of January and again in 6-12 months. We are hopeful that this test will show something definitive and will give us a starting place for a new treatment plan so that Shane can just be the fun-loving kid that he is without constantly worrying about his health.