The Tetuan Family

What Rare Disease were you or your family diagnosed with?

Ohtahara Syndrome.

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

Florence Gray Tetuan was born February 20, 2014 and our journey started on March 1, 2014 after many, many, many tests, med trials and head scratching. 

What is your greatest hope for your child?

Our greatest hope is that our child gets a CHANCE at a quality life, less medicines, less machines. That people see past her diagnosis and treat her equally.

If you could improve/change one thing about your or your child’s treatment and experience, what would it be?

I would change the attitude of doctors to fight for more, not to just give up and ignore, ask a partner with our institutions, go the distance to research, there might be a trial or another doctor somewhere that can help us achieve a personalized treatment plan, not just stick a textbook cookie cutter treatment plan on her and if it fails give up and say to let her go.

What is something positive about your rare journey, as it relates to Kansas City?

Resources such as, Johnson County Infant Toddler Services, CCVI, TA Waiver, Community, Kansas City rallies around people in need, you likely wouldn’t get that in a larger city.

How can RareKC help you and your family?

Research, treatment trials, complete change in textbook/cookie cutter protocols that specialists insist on using despite failure.

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

No one is exempt, there are so so so many sick children in this world. If you are affected by rare, YOU as the parents have to fight, you have to research, you have to challenge. Love your kids and treat them as if they were normal. Don’t let the medical community let you look past the fact they aren’t just a patient, they are gifts from God, they are OUR children.