Update on Jakob
Jakob was born with an extremely rare genetic disease called microvillus inclusion disease—essentially, his intestines fail to absorb nutrients.
At 2019 Speak Now for Kids Family Advocacy Day, Jakob and his family advocated on behalf of kids like him and the care he receives from C.S. Mott Children's Hospital.
Below is an update from his mom.
Fortunately, Jakob hasn't had major medical issues develop this year! We continue to have a combination of private insurance and Medicaid to cover his health care needs.
Jakob also is enrolled in the State of Michigan's Children with Special Healthcare Services program, which provides:
- Coverage and referral for specialty services based on the child's health problems.
- Family-centered services to support the child's primary caretaker.
- Community-based services to help you care for your child at home and maintain normal routines.
- Culturally-competent services that demonstrate awareness of cultural differences.
- Coordinated services to pull together the services of many different providers who work within different agencies.
During the COVID-19 pandemic, most of Jakob's appointments with his intestinal rehabilitation teams are through telehealth.
He did need to visit the hospital for some infusions, however. We've felt safe during our medical visits at C.S. Mott Children's Hospital—everyone wore face masks and social distancing was at a maximum.
All of Jakob's doctors and nurses are wonderful with him! We know they'll do what is necessary for him in the best and safest way possible.
You're encouraged to read more about Jakob from when he participated at 2019 Speak Now for Kids Family Advocacy Day.