Our angel, Tyler Davis -- an Angelman Syndrome success story 

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Also, Link to Videos of Ty, Family & Friends at Denver's 2008 Angelman Walk

Dear Friends:

March 4, 2002, was the day we got Tyler’s diagnosis of Angelman Syndrome.  It has been over 8 yrs since we got the news.  Sometimes it seems longer then that and at others it seems just like yesterday.  What I do know for sure is that Tyler is doing amazing and we are so very proud of him and all his accomplishments!!  When we were given his prognosis we felt nothing but doom, but I have to say our lives have been nothing like we expected!  Life with Tyler is full of joy, happiness, a never ending smile, unconditional love, hope, admiration, tolerance, gratitude, and pride!  Tyler has made us better people and I honestly believe that he has a positive impact on everyone who is fortunate to meet him.

Tyler is finishing up second grade where he attends school every day until 2:30 when he is dismissed 45 minutes early to attend his various therapies.  Of course he loves the other children and his supporting staff and I believe they are very fond of him also.  He shares his time between the regular classroom and the special education classroom.  This seems to be a good mix for him.  It allows him to bond with his peers and be involved in as many of their activities as possible and then he gets the one on one less distractible time he needs to be able to focus on the task at hand.  Tyler is growing and learning to be more independent and it is so wonderful to see.  He is being challenged everyday to work on his independence around the classroom, during desk time, and in the hallways.  He will be with the same supporting staff next year so we are very excited to see his continued growth.

Tyler continues to be involved in several therapy programs after school.  He has speech, water, hippo, occupational, and music therapy once a week. He continues to see his behavior therapist two times a week.  Yes, he is a very busy man, but he is reaping the benefits from being able to be in these programs. 

Sadly we have to say that he has had a set back with seizures. After going 3 ½ years without a seizure, we began to wean him from the Ketogenic diet.  He had a handful of seizures so we put him on a modified Atkins diet.  We did the switch because to go back to the ketogenic diet would have been very difficult for Tyler due to the strict food portions.  Tyler was becoming very hungry between meals so we wanted to first try an option that gave him access to larger food portions and snacking.  The Atkins diet is not usually used on young children, but we felt at this time it was our best option.  After the switch to the Atkins diet Tyler went over a year again seizure free. Unfortunately, this past February he began to experience a handful of seizures and continues to have a few here and there.  We are staying with the Atkins diet at this time and modified his one medication that he takes for sleep, which can also help with seizure control.  He has been experiencing a growth spurt so we are hoping that this may be an attribution to the seizure activity and will pass.  Seizures are a very scary and unsettling occurrence that unfortunately so many angels and their families have to deal with.  With each one I feel that we take steps backwards in allowing Tyler to have his independence.  Not wanting him to walk, stand, or even sit unattended.  We are blessed that Tyler has had the lengths of times without seizures that he has had.  Every day without a seizure is a gift and I make sure that EVERY night when I say my prayers that I thank the Lord for letting him go another day without one!

A constant question that I still get asked is how do Tyler and his brother Clay get along?  How is Clay with his little brother?  Time and age has not faltered, but even strengthened the amazing bond that Tyler and Clay have.  As I answer this question I still tear up.  Tyler is so blessed to have the best big brother a little guy could hope for!  Clay is amazing with Tyler and shows him nothing but tolerance, patience, admiration, protection, and most of all love for him.  Clay is now 13 yrs old and he still gives Tyler hugs and kisses.  He is constantly stating how great Tyler is and how amazing he is doing.  Clay is at a delicate age where image is so very important to teens and he is such a stand up young man when it comes to showing affection and admiration for his younger brother.

We are so very proud of Tyler and the huge achievements and accomplishments he has made!!  As I wrote once before, he is like the “Little Engine That Could” and we will continue to keep him working and motivated to achieve all that is possible.  He has come so far and I can not wait to see what he accomplishes next.  We want to thank everyone who continues to work with and pray for Tyler.  We could not do this without all the wonderful therapist and teachers who continually give him love and support.  We also want to thank our family and friends for supporting us through this unknown journey.  Tyler is a true blessing to our family and everyday he gives us joy, love, and hope. 

Warmest regards,

Stacey Davis, Tyler’s Mom

April 26, 2010