The Urbano Family

Anneliese - Blounts Syndrome

What Rare Disease were you or your family diagnosed with?

Blount’s Disease.

Please tell us how long ago and how your journey with your rare disease started?

At 18 months old Anneliese was diagnosed with a rare bone condition called Blount’s Disease and a rare chromosome 4q Deletion.

What is your greatest hope for your child?

Our HOPE is that an organization be developed for Blount’s Disease to help support Blount’s families with travel expenses, medical supplies and eventually better research to lead to a better understanding. No matter how hard the journey, rare parents will never give up; but only keep fighting.

Please write down one thing you would like to tell the Kansas City community about rare disease.

Anneliese is currently 10 and ½ years old and runs a project called Bottlecaps4Blounts making custom made awareness keychains for the Rare Disease community. She loves spreading awareness for the rare community and sharing her journey with others who have her condition.