Utah Rare Conditions Stories and Advice

Important Tips for Families of Children With Multiple Disabilities, Rare Conditions or No Diagnosis

  • Connect with a parent group for emotional support and education.
  • Keep seeing your child’s regular doctor. Your doctor should keep track of medical discoveries that might help you with a diagnosis. Think about using the medical home model. See tips on how to talk to your doctor.
  • Celebrate your child’s abilities. It’s important for your child to know that you see their promise and potential. When you focus on what your child can and does do well, your child will see those strengths too. So will the rest of your child’s care team and your loved ones.
  • Don’t just look in your city or town. Hospitals such as MD Anderson, Texas Children’s Hospital in Houston, or the Baylor College of Medicine Molecular and Human Genetics Division might have more up-to-date testing that can help with your child’s diagnosis. Your insurance company, Medicaid, or your local Shriners Hospital for Children are a few choices that might help you pay for travel costs.
  • Understand that your child’s diagnosis might change multiple times. If you are trying to get health-care and education services, any diagnosis might be more important right now than a final diagnosis.
  • Look for university or medical center research groups that might be working to understand your child’s condition or specific symptoms. Ask your doctor, talk to your support group, and search online to see if you can find any of these.
  • Keep doing your own research too. You know your child better than anyone else, and you might find something your doctor doesn’t know about yet. If you are overwhelmed with information, it’s always okay to take a break and then go back to it.
  • See stories from other families whose children have an undiagnosed or rare condition.

What Other Parents Want to Say to You as You Begin Your Diagnosis Journey

“Don’t panic. You work through it, no matter how overwhelming things might seem.”

“This is not your fault. Breathe.”

“Read everything you can. Knowledge is power.”

“The hardest thing to accept is that you are the expert when it comes to knowing your child.”

“There is always hope to be found.”

“The pain dissipates as your child becomes happy, smiles, and has friends. The pain does ease.”

Connecting With Other Parents

When connecting with a parent group, you might want to find other parents whose children have similar symptoms or conditions to yours. You can look on our Connecting With Other Parents page for a broad list, but here are a few that have services specifically for families with children who have no diagnosis, multiple diagnoses, or a rare condition:

  • Texas Parent to Parent offers many resources, parent forums, and connections for families of children with disabilities or special health-care needs.
  • U. R. Our Hope is a group that supports families whose children have rare conditions, no diagnosis, or multiple diagnoses.
  • Mommies of Miracles is an online support group for families of children with disabilities or special health-care needs.
  • Syndromes Without A Name offers support specifically for children with rare conditions or without diagnoses.