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Jakob had a rare brain disorder called Joubert Syndrome. It is genetic. Read below to find out more about his syndrome. Jakob loved school very much, and his favorite show was Yo Gabba Gabba! We are very sad to say, he passed away on Feb. 24th, 2009. He had been having seizures for some time and we believe that is what caused his dealth. We will forever remember him and love him dearly.
Ava loves going new places and seeing new things. She really enjoys her toys and is currently into Barbies right now. She loves to play outdoors the best. She is very girly but can be rough and tough like the boys too. She always has a smile on her face.
What is Joubert Syndrome? Joubert Syndrome is a rare, genetic disorder that affects the area of the brain that controls balance and coordination. The disorder is characterized by agenesis (absence) or hypoplasia (underdeveloped) of the part of the brain called the cerebellar vermis and a malformed brain stem.
The most common features of the disorder include ataxia (lack of muscle control), an abnormal breathing pattern called hypernea, sleep apnea, abnormal eye and tongue movements, and hypotonia. Other malformations such as extra fingers and toes, cleft lip or palate, tongue abnormalities, and seizures may also occur.
Jakob dancing with Brobee and sister! 4.5 years old Nov 2008
A Video of Ava playing at 2.5 yrs old
Stories
5-6-12 Well things are going well but time sure flies now a days. I have 2 more days of classes left!! Three more finals and I am done with classes FOREVER!! Lol I love the sound of that. We are leaving for our family vacation next week too. I am excited to be back on the beach again. It’s a much needed break before ...
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3-22-12 Ava did really well with her surgery. She came through it all and her tonsils are now gone!! The doctor thinks she will do much better now. We are also happy to announce we are pregnant with baby #3. I am due October 6th, 2012. We have had 2 ultrasounds so far and baby is looking good. I go start se...
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2/17/12- I have been really busy with school. Ava is getting her tonsils taken out on March 8th. She has been sick several times now with tonsilitis and her tonsils are huge. Other then that not much going on. Not looking forward to the 24th, it will be 3 yrs since we lost Jakob. I so hate the reminder it brings. 12-17-11 Finally I have a break from school!! A full month off. I ended up with 4 A's and 2 B's in my classes. I wish I would have gotten all A's but I am happy with that. That was the most stressful semester of my life. Only one more semester of classes left!! Woohoo!! This time next year...
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11-25-11 Well things have been extremely busy for us lately. School has been very hard this semester. I have been working hard to keep good grades. I think I will end up with mainly B's but I am okay with that. I really wanted A's but soon found that to be impossible. I have really enjoyed my fieldwor...
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Guestbook
LOVE YOU -DICK UPTON Mar 22 2012THANK YOU,,LOVE YOU -GREAT GRANDDAD Dec 26 2011Thank you for the pictures of Ava! We love them!
-Kristi Dec 26 2011So love all the pics, very pretty, even BriBri! -moms/grammers Nov 28 2011Hope you guys aren't roasting down there! Stay cool! Love ya'll! -Kelli, Danny & Lily Aug 07 2011
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