"You're off to great places! Today is your day! Your mountain is waiting. So...get on your way! ~ Dr. Seuss

Sunday, September 16, 2012

Mito Week and an AMAZING Little Boy

I have the indescribable privilege to work with an amazing little boy this year.  His name is Gavin and he is one of my kindergarten students.  I asked his mom for her permission to share a little bit of his story, so here it is...

Gavin has an incurable Mitochondrial Disease and PKD, a neurological condition that causes tremors and episodes with different types of involuntary movements.   I had never heard of either of these diseases until this year and the more I learn, the more I am inspired by this little boy.   Gavin is a smart, funny, sweet little boy who faces daily struggles that we cannot imagine.  Yet, he is in school whenever possible, eager to learn and do all of the things the other children take for granted.  He has a service dog that alerts for seizures and PKD episodes who accompanies him to school each day.

After an episode or seizure, Gavin needs time to rest before he is able to rejoin the class.  He has a bean bag that can be moved around the room as needed.  He uses it to rest and recuperate from an episode, take a break whenever he gets overtired or as a seat when he is too shaky to sit in a chair.  As you can see, Hershey is always at his side.




The other children in his class have accepted Hershey as part of the class and do a remarkable job of "ignoring" him.  It is important that other children not pet him so that Hershey is able to stay attuned to Gavin's body chemistry.  In fact, in a school of @ 1,000 children, there have been no issues with other students trying to interact with the dog.  Gavin's mom accompanies him to school each day to act as a handler for the dog.  She is incredible.  Sometimes, as teachers, it can be difficult to have a parent in the classroom, since we all know that children can behave differently when their parents are around.  Mrs. Lawrey does an amazing job of knowing when to assist Gavin and when to let his Gen. Ed teacher or I work with him.  Gavin's family has seen him regress both physically and cognitively over the last 3 years, but their hopes for him continue to be positive.  I have so much admiration for any parent who fights to give their child as normal a life as possible and Gavin's parents do a great job.

Gavin has a big sister, Makenzie.  She is such a special little girl.  She loves her brother and takes care of him whenever she can.  In fact, most of the money raised to defray the costs of getting Hershey came in as a result of Makenzie's idea of creating a website for people to use to donate.  Gavin is surrounded by a loving family who are dedicated to helping him have as normal and healthy a life as possible.

I am finding it very difficult to express in words what I feel about this little boy.  We love all of our students, but once in a while, we meet a student that finds a special place in our hearts and Gavin has done that for me.  Some days it is heartbreaking to watch him struggle or deal with a PKD episode or a seizure.  Other days, it is uplifting to see him laughing and participating in classroom activities.  All I know for sure is that my life will never be the same after meeting and working with Gavin.

This is Mito Week.  At our school, we have green ribbons outside the classroom doors and a large green ribbon made with Dixie cups in fence at the front of the school.  In October, many of our schools' family participate in a golf scramble to help raise money for this incredible little boy.  His medical costs are so high and it is a struggle for the family.  Please visit Gavin's website at http://thegavinlawreytrustfund.webs.com/ if you would be interested in helping this family.

Have a Marvelous Monday!


7 comments:

  1. Gavin is lucky to have such a dedicated teacher like you!

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  2. Amy, these little ones who we are so privileged to teach and be a part of their lives are sent to us with love and a plan I am sure of it. I completely understand how you feel about this little one and how much strength they give other people. If you would like to read a post about a little one who makes me smile every day I'd love for you to check out this post
    http://poultneytania.blogspot.com.au/2012/06/special-student.html
    Tania
    Mrs Poultney's Ponderings

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  3. This comment has been removed by the author.

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  4. Wow, what a blessing to have a little boy like him in your classroom! And he is also blessed to have you as his teacher. I wish Gavin and his family all the best on this journey! ~Oh, and sorry about the previously deleted comment...that was me, but I published it under the wrong account!

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  5. What a great story! Thanks for sharing! I have a friend who has two sons- one of which has Mito. He is in Kindergarten this year and has a best dog friend too. I've watched from afar (they are in AZ and I am in OH) as his family deals with the difficulties that come with this disease. They have an amazing fight in them.

    I hope for a great school year for you and Gavin! :)

    Rachel
    A-B-Seymour

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  6. What a lovely post! Gavin and his family sound amazing and I'm sure you, your students and the school will be all the richer for knowing him and his family. Hoping for all the best for Gavin!

    Addie

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  7. What a strong little boy. It's amazing how he handles himself so well. I had a little girl last year with a rare disease and she was (and is) an inspiration to everyone.

    Ms. M
    http://thirdgradegems.blogspot.com

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