Jace Tannehill

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In April 2004 we welcomed our second son Jace Allen to the World. He was 6lbs 11oz healthy newborn, He was beautiful! Soon after arriving home we realize Jace had serious feeding issues and would cry relentlessly. When I took him to the pediatrician, He diagnosed.....COLIC. He said as Jace grew the spitting up would be less and the crying would stop! As months passed we became more and more alarmed with Jace's crying and what I thought was discomfort. We decided to get a second opinion! The second our new pediatrician walked into the room and saw Jace's condition she hospitalized him immediately. He was then diagnosed with acid reflux and failure to thrive. He was put on medication for the acid reflux and slowly but surely he began gaining weight but anything beyond his laughter was non-existent. Just before Jace turned 2 he was diagnosed with Angelman Syndrome (AS). AS is a rare genetic disorder that affects about 1700 individuals in North America, it causes severe developmental delays, speech impairment with minimal to no verbal language, seizures and motor difficulties. Which a\was a serious diagnosis but we were happy to know that the journey we had traveled up until then were symptoms of Jace's genetic disposition not just your baby is sick. At about 18 months Jace began making milestones, sitting, pulling up to furniture, and crawling. They were few and far between but when we got them our family would celebrate in party proportion! After 3 years of therapy and hard work, IT HAPPENED! JACE BEGAN WALKING! It was a HUGE moment for us! A changing moment in his life and a turning point in his development! Once Jace was not focused on getting around he really began to try to communicate with us by pulling us to things he wanted and putting our hand on them. In 2007 Jace had his tonsils and adenoids removed due to chronic ear infections. Which I hear is common in our angel community. Other than that he has been a very healthy thriving boy over the years. Jace is almost 7 now: he weighs a whopping 63 lbs and is very, very tall for his age. He is growing like a weed with an appetite of an ox. He has also has a new found love in his magna-doodle. He will carry it all over the house. Jace is the second of our 4 children, Kyler, 9, Adyson, 2, and Dane is 18 months old. Jace has a love for the babies that is just amazing hew loves them and wants to play with them when in the mood, of course! If not Jace will go to his room and watch T.V or play with toys. He loves Elmo and watching classic Disney cartoons .Anything with music really. He has also has a new found love in his magna-doodle. He will carry it all over the house. Jace is a big 1st grader now and loves school. He enjoys P.E, lunch, and Music the most, of course! Jace is really beginning to blossom as an individual and is eager to tell you what he wants. This last year he has shown a profound preference in EVERYTHING, his foods, his playtime activities, movies he would like to watch even who he wants to be around, you name it, Jace has an opinion about it. He will pull you to objects and put your hand on them to let me know what he wants He is eager to tell you what he wants. If you cannot figure it out though, he will pinch you. He has mastered a super kung fu death grip, so that has not been hard to deal with. We are still working the PECS, picture exchange communication system, to help relieve some of Jace's frustration. He is beginning to use the cards appropriately, well that if he is in the mood. He has officially hit the terrible twos! So Jace can be persistent in his dislike of things. This is great! Now we just have to get him to understand the cards will get him what he wants. The biggest Milestone this year is Jaces use of his voice...HE SAYS MOMMA! thats right folks...something that I had never thought could be possible! It is a slow moving process but we are making progress every year! Which makes us so proud of Jace's perseverance and, he is just a joy to be around and a blessing to our family, he is the purest form of love god could ever grant someone. Jace is our ANGEL INDEED!

Although Jace may never live independently we are committed to giving Jace the best life has to offer him. The Angelman Syndrome Foundation (ASF) is the only resource for us as parents to turn to for guidance. The ASF is a medical community of parents and Angelman Children. Their mission is to advance awareness and treatment of Angelman Syndrome, through research and support. Annually the ASF hosts a Walk-a-thon in multiple cities across the nation to raise awareness along with funding. This event is so very impotent to our family and would if you could join us. The 5th annual ASF Las Vegas Walk will be on Saturday May 21, 2011, at Lorenzi Park. Registration to begin at 7:30 a.m. walk to begin at 9 a.m. See you there!