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FARAFARA Cure FA

The Miller Family

Miller Family 1 

Name: Sean and Ryan Miller

Age: Sean (8), Ryan (6)

Where do you call home? Denver, Colorado

Education: Sean (3rd), Ryan (Kindergarten)

Who do the boys live with? They live with their parents and 2 older siblings.

What's a typical day for you? A typical day involves getting ready for school, going to school, playing with friends, playing video games and watching some YouTube.

How long have you known Sean & Ryan are living with FA? Sean was misdiagnosed with CMT at the age of 4. There was something always off with his gait and he fell more than other children his age. It wasn't until we had an abnormal EKG and discovered cardiomyopathy, that the cardiologists suggested FA instead of CMT. We had a blood test done and it was confirmed when Sean was 5.

Ryan doesn't show symptoms (only notice minor balance issues, but would not know unless you know about FA). We wanted to get him tested for FA, because we just wanted to know. Ryan also tested positive for FA when he was 5.

Are there any others with FA in your family? No one else besides Sean and Ryan that we know of.

 

What do they like to do to stay active and what type of exercises work for you to stay strong? They both love to play with their friends, which keeps them active. Sean goes to physical therapy every other week.

MillerFamily2Any hobbies or special interests? Sean loves to play video games and watch YouTube. Sean loves sports and especially the Denver Broncos and Von Miller. Ryan loves to do crafts, art, watch youTube and is learning to play video games with his brother.

When FA gets them feeling down, what do they think/do to feel better? The boys look at the positives when they are upset. They both have a really great attitudes.

Interview with Sean and Ryan's Parents

Your Name(s): Kendra and David Miller

Relation to FA patient(s): Mother and Father

What quality or trait has been brought out the most in Sean & Ryan despite living with FA? Both of our boys are so positive and never give up. Witnessing their positive attitude towards this disease has changed our views. We try to stay positive and see the positives in everything, even when it sucks.

What did you find was the best way to discuss the diagnosis with the boys? We have always been honest about the diagnosis. Sean and Ryan are so young, so we have kept it age appropriate, but always willing to answer their questions with honesty.

What advice would you give to other parents whose child is newly diagnosed? It is a bulldozer to you and your family at first, but it does get better. It has helped me to research and read everything I could find about FA. We plan to attend some of the rideATAXIA events and other FA events going forward. It would be great to meet some other families that are going through the same.

How have Sean & Ryan inspired your life? We are more understanding of others and their struggles now. We are much more positive now than ever before. We have taken more family vacations to just enjoy us and make memories. We appreciate our family more and FA has made us realize how important our family time is over work, school, etc. Both of our boys are positive and have such a great outlook on life, and so much hope, with BIG dreams. They inspire us to have hope too.

How have you been encouraged for their future living life with FA? We are encouraged by seeing others diagnosed as well living their lives and going to school, working jobs, having families of their own. I thought this was a horrible death sentence at first with no hope for a future. I see that is wrong now...so many others with FA have gone on to do BIG things, go to college, have families, get married, etc.

What is one way FA has POSITIVELY affected your lives? We have spent more quality time together as a family then ever before and really worked on creating memories together. Life can get in the way so easily, and FA caused us to push the PAUSE button and truly enjoy each other.

JordanHowell sig 16

 


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