Karter Sayko started third grade at Cherry Creek Elementary School with his classmates. Anyone who comes in contact with him will see his zest for life. Many do not know what he and his family have had to overcome and are still faced with an array of chronic diagnoses and symptoms starting when he was born. Diagnosed with Joubert Syndrome as an infant, the disorder has also brought on other issues including food intake and avoidance disorder, duplicated renal system, global development delay, inflammatory disorder, hiatal hernia, and more. Doctors, testing, and surgery have been a normal part of life for Karter. Yet he pushes on.
Diagnosis of a Rare Disorder
Life with Joubert Syndrome started for Karter as an infant. Since then, he has dealt with countless visits to doctors especially has other things have come up as a result of the originally diagnosed disorder. Testing for additional disorders and mitigating other complications which come up is a regular part of his life and that of his family.
A barrage of treatments have included physical therapy, occupational therapy, speech therapy, behavioral, medications, and various devices to help with walking and stability. Because Joubert Syndrome and medical related issues which come with it are a life-long diagnosis, treatment becomes a lifestyle. Ongoing testing will continue on a permanent basis as well. Genetic testing, blood panels, muscle and skin biopsies are routine as well as any testing needed for new symptoms which may develop.
In April of this year Karter traveled to Mott Children’s Hospital in Ann Arbor for surgery to have an ileostomy bag placed to help his bowels move. Complications following what should have been a somewhat routine procedure led to a two-month long hospital stay two hours away from home. It was during this time that a Facebook page was set up to allow updates to be given to friends, family, and those interested in how Karter was doing.
According to Karter’s mom, Amina Bolen, at some point in Karter’s life he will plateau intellectually and physically. “Karter is currently dealing with severe intestinal issues. He has a colostomy bag because he can’t pass stool on his own and has a pubic catheter because he struggles to pass urine. We are unsure if this is temporary or part of his decline.” says Bolen of her son’s current medical state.
Leading a Normal Life When Possible
For Karter and his family all of the medical related issues is their normal. Like it or not, they have had to adjust and be accomodating. And they persevere out of love for each other, their faith, and support of friends, family, and the community.
Due to ongoing medical situations, Karter has had to miss school but he has been able to continue with school work even when he’s unable to attend class. Teachers, staff, and even students at Cherry Creek Elementary School do what they can to help Karter when he’s in school as well as when he’s unable to be there. Last week, Karter was able to start third grade with his classmates. He has another surgery scheduled for October but the plan is to be out for a couple of weeks and be able to return.
Having a younger brother with an overabundance of medical issues can be tough. That’s the position Karter’s brother, Kamron, who is a fifth grade student, finds himself in. Bolen is proud of her son, who has had to miss playdates, endure driving to and from appointments, middle of the night wakings, and staying in hospitals, all which come with the Karter’s diagnoses. She says of her older son, “His world has truly been so very difficult. Yet he loves his brother so much. He protects him and is there holding his hand during blood draws, tests, surgery preps. I couldn’t ask for a better son and big brother. We truly are so very proud of him.” The family deals with uncertainty on a daily basis yet tries to live establish a regular routine whenever possible.
Creating a Support System
Bolen and her family are thankful for a strong and growing support system within the community. As members of Impact Church, they have had a myriad of people praying for them in addition to helping with meals, gifts, and cards, especially during Karter’s two-month hospitalization. Extended family has also stepped up in helping care for Kamron when half of the family unit was on the other side of the state.
Cans 4 Karter also started this spring. Those wishing to donate cans can send an email to [email protected] to arrange getting them to a drop off spot. Money raised has helped the family with medical and travel expenses. Those looking to help in other ways can also send an email to this address.
The use of social media has also played a significant role in creating awareness for Karter’s plight, Joubert Syndrome, and providing a look into what the life of a special needs child looks like. Bolen posts regularly about how Karter is doing on the Facebook page Karter’s Journey. “Our world is filled with children who don’t know what special needs looks like and I believe it’s because a lot of adults don’t either. So using this page to educate adults so that they can in turn educate their children to see all differences as normal in the world is our number one goal.” says Bolen. Both she and Karter are open to answering questions and welcome them. Bolen and her husband, Gabe, have become accustomed to the care Karter needs in addition to remaining cognizant of Kamron’s needs as well. They hope to share their knowledge and story as a way to show children with special needs have the same thoughts and feelings as their peers.
Turning Struggles into Strength
Comments to the effect of “I don’t know how you do it.” or “I couldn’t do that.” are common according to Bolen. She says, “But the truth is, you never know how strong you are or how much you can endure until you have no other choice. God’s strength is made perfect in my weakness. When I feel like I can’t possibly do another hospital stay, or blood draw, or really any of his daily needs He gives me strength.” Bolen works part-time as a dance teacher with a program through Impact Church. After losing several jobs due to the inability to be reliable due to Karter’s daily care, appointments, and procedures she was given the chance to work somewhere where her son’s health is more important than perfect attendance.
Bolen believes God gave Karter a fighting spirit. And it’s this gift which allows him to remain strong while traveling the path his journey takes. Life has not been easy and challenges are still ahead. This life of doctors, testing, and hospitals is all that Karter has known. While unfortunate and even unfair, it also makes it easier for him to face. Even when hospitalized and dealing with an enormous amount of pain, Karter remained strong.
Karter’s journey will continue. And with the help of social media, friends, family, and community support, awareness will be an added factor. Times of frustration, sadness, and even anger have made the family stronger and more determined. They appreciate good times when they’re all together not having to worry as much about when the next medical hurdle will come up. They take on planned and unexpected events when dealing with Karter’s health. But most of all they continue to be there for each other no matter the situation.
You are truly an amazing family.I cannot express the Love I have for you and your family. When others have hardships or loss you are the first to step up and say how can we help. Karter’s strength gives education to children his own age. the first question i asked Mason after his first day of school was. Is Karter in your class this year? He replied no and expressed disappointment. As did I. Karter helped Mason with his grieving this year. And with that we thank your family and Love you All.