Bridget, our thespian extraordinaire!  RJ

FA at School

Telling Your Child's Classmates About FA Return to Index
Prepared by Raychel Bartek for presentation to Keith's 6th grade classmates.

How many of you have attended school with Keith since kindergarten? (raise of hands)

You are now starting your 7th and final year at Wakefield Forest Elementary. Many of you were in Ms. Buhr-Smith's 3rd grade class with Keith. Towards the end of 3rd grade, Keith began having trouble with handwriting and getting his assignments completed. Keith's parents, teachers and school specialists met throughout 4th and 5th grade but could not determine what was wrong. By the end of 5th grade Keith was having so much trouble writing that he would take his left hand and hold ít down on his right hand just to keep his pencil steady enough to write. That was taking Keith a long time. Those achievement tests were really tough because of the tiny circles you have to fill in. During spring break in 5th grade, Keith flew back early from his trip to Louisiana to be examined by a doctor called a pediatric neurologist at Children's Hospital in Washington, DC. It was determined that Keith had a rare genetic disorder called Friedreich's Ataxia. (NOTE: Write it on the board or an overhead)

Friedreich's Ataxia is so rare that it is called an orphan illness. Only 1 in 50,000 people in the US have this disorder. The enrollment in our county school system here in Fairfax County, Virginia, is about 150,000. That means there could be 2 other students who may have Friedreich's Ataxia in the 12th largest school system in the United States. That is rare!

I know many of you probably are starting to think of questions you'd like to ask about Keith and Friedreich's Ataxia.

Here are some questions and answers that you may be thinking about asking:

Can I catch Friedreich's Ataxia from Keith just like I can catch a cold from another person?

No. Keith inherited this disorder in the same way you inherit blue or brown eyes or brown, blonde or red hair. He can not pass it on to you.

Can Keith take any medication to cure Friedreich's Ataxia?

No. There is no pill that will cure Keith.

What will happen to Keith?

Over the next ten years Keith will gradually lose his physical capabilities to walk, run and write. The good news is that Keith will not lose his mental capabilities. His brain power will remain the same! He'll be the same kid you've always known.

Will there ever be a cure?

Someday...maybe 5 or 10 years. Something will definitely come along to help Keith. Our body is like a big and difficult jigsaw puzzle. The Human Genome Project is a huge research program which is putting together our genetic puzzle pieces to see how our body functions. Some of this research has already led to some promising discoveries for those people with Friedreich's Ataxia. Scientists already know that Chromosome 9 is where the Friedreich's Ataxia gene is located. But, it could be years before all the pieces are put together.

But what are the doctors doing right now to help Keith?

Keith is being monitored by 8 different medical professionals in the health care field. You may notice that he misses some classes for appointments. You may notice that Keith wears ankle weights and wrist weights. The doctors think that helps him with his balance. He has been prescribed exercises to keep his body strong and flexible. He takes 8 different vitamins every day.

What are the teachers trying to do to help?

Try to imagine what it would be like to tell your hands or legs to move a certain way and they wouldn't do it quickly or at all. Because of these problems for Keith, the school will allow Keith to use a computer or a tape recorder to complete assignments or tests. He will have a set of textbooks at home and at school so he won't have to carry such a heavy backpack.

What can you, the students, do to help?

Keith may need help in writing down assignments or notes in class. He may need to leave class early to avoid the crowds at lunch or at the afternoon bell. Remember, if he bumps into you, it's probably not on purpose. Most of all remember, he's the same Keith you've known all these years. I know many of you must have some additional questions. I'll try to answer them now...

END of PREPARED TEXT

NOTE:
Our son Keith was in 6th grade when the school recommended we tell his classmates about his diagnosis. He had been diagnosed at the end of 5th grade. Keith, his dad and I appeared before the 3 different sections of 6th grade--about 25 kids per section. I had prepared the above general remarks--mainly to avoid becoming emotional or rambling. After the prepared remarks, we opened the floor up for Students Q&A.

Here are my observations:

You can expect a questions about life expectancy. We assured them that Keith would graduate from high school with them and go on to college. If pressed by another question re life expectancy, we only said that none of us know how long we're going to be around and keep the Q&A moving.

It was asked if Keith would be in a wheelchair. The answer was yes, he'll own a wheelchair probably in late high school or in college. He might give you a ride. One girl had noticed Keith wearing the heart monitor and asked if that had been related to Friedreich's Ataxia. If your child wears a TLSO brace, that question may be asked.

When asked further about inheritance, we were able to talk about getting one defective gene from each parent. Both parents were present so it was easy to use us as the example of carriers. We also stressed how much was being done in research today.

If there are siblings you can expect the question about whether they will be afflicted. All the kids knew Keith had 2 other brothers and wanted to know if they would get Friedreich's Ataxia. We were able to say that Keith's little brother is a carrier like his parents and Keith's older brother did not get either copy of the Friedreich's Ataxia gene. His brothers got a simple blood test that would tell the doctors if they would get it.

Props: This makes something so difficult to understand a little more real. Keith passed around his ankle weights and his MRI. Keith was not talkative but very involved with the passing around of his stuff.

Students' emotions: Some girls cried as we talked about the possibility of a wheelchair in the future; some boys offered to help Keith around school. Most of all kids appreciate the simplified truth. Q&A allows you to answer questions in your own general way.

Your child: Keith is now 14 and he would probably want to be absent or not around for this address. Each child is different in this respect. I would suggest asking your child if they want to participate or if they have any thing they would especially like you to put in your remarks.

Bottom line: Presenting useful general information in a confident manner is key. If you appear comfortable, it helps students know that your child is the same student they have known over the years. That is a very tall order for a parent discussing such an emotional subject. Best of luck. 

 


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