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Stacie Vetterli

Fundraising for Zackary V's Van Raam OPair

For so many years we've wanted to be able for our son Zackary to enjoy long bike rideswith the entire family, but needed to have a bike that would allow us to be able to see him to make sure he was safe from tipping over. We'd never be able to afford something like this on our own, so when we saw this bike was available in the Great Bike Giveaway , we had to try our luck in winning one for Zack.

The individual who receives the most votes for each bike will win their bike, and those with at least 50 votes will be entered into a drawing to win one.

We would truly appreciate your help with winning this special bike for Zack and allowing us the opportunity to finally bike ride together , thanks so much for voting!!

To be able to enjoy bike rides with the entire family.

FEB
19

Zack, his dad and older brother Kaleb at the Angelman Syndrome Walk in Sacramento ♥️

FEB
14

I just want to give a very heartfelt Thank You, to each and every one of you who have voted, shared and donated to Zackary's bike voting campaign/fundraiser, words cannot express how touched we are by the outpouring of love for our son! With your help we've managed to get into 1st place to win this awesome wheelchair bike! We have tried our luck twice before.. unsuccessfully..and this is the closest we've ever gotten to getting something like this for Zack. As many of you might know, these last 4 years have been pretty tough for him and our family. Seizures are always a big concern for families who have a child with Angelman Syndrome. For Zack we had been pretty fortunate his first 12 years , he did develop drop seizures at the age of 2, but thankfully we were able to get them under control , and he'd really only have breakthroughs if he were sick. But in 2015 we started seeing what we thought were seizures, but these were a bit different, he started having tremors,that would effect his hands, legs , facial muscles , tongue, where he couldn't move, stand or swallow effectively. These episodes last for hours, where often times he will have stiffening of the arms, his fingers would curl and with this you'd think this was seizure activity, but we've had all these episodes captured with EEG's and none of this is showing up as seizure activity. But what we suspect is that they are Non Epileptic Myoclonus episodes...Dr's specializing in Angelman Syndrome say they look like seizures, they treat them like seizures, but they're also harder to get under control. =( His dr's here are a bit perplexed as to what therapeutic to use, we've tried medications, ketogenic diet, and right now we've been giving him CBD, which has been the only thing that has given us a few weeks to a few months relief. Shawn and I finally made the decision to make an appt with a pediatric epileptologist who is the head of the Angelman Clinic in Boston, MA. in May. We hope and pray that he will be able to help us understand what is going on with Zack, look at what medications he's currently on and advise us and his current dr's here with Kaiser how to move forward. Unfortunately Kaiser wont pay for the visit, so the office visit, flights and hotel stay we'll be paying for ourselves...so needless to say , saving up to purchase a bike like this when we're paying for so many other things for Zack, is just not within our reach. Having a bike like this would truly be life changing for us. Just to be able to load Zack up in the bike in our garage and get on to the bike trails ( which are literally starts 3 houses down from us within our greenbelt) and ride for several miles would be so incredible. We would love to make this happen for Zack, and with your help it just might become reality!!! Please continue to share Zack's page, voting ends Feb 27th 12pmEST Thank you all so much!!!

Zack catching his first wave with Ride a Wave in Santa Cruz!

Zackary the early years =)

FEB
9

Thank you all for voting, sharing and donating to Zacks bike campaign! ❤ We finally received enough votes to be entered into the raffle at the end of the contest. But, the individual with the most votes in each bike category will be guaranteed to win their selected bike. So please if you havent voted yet, we'd so appreciate your help by voting and sharing our campaign with friends. Thanks so much!!

Zack and his dad at our annual Angelman swim party

Comments

Fundraising Progress
$950 raised of $6,400 goal
 

Recent Donations

$25.00
1. Robert Roina
2. Anonymous
3. Katie Vargas
Good luck, Zack!
$25.00
4. Luvey Deatherage
$20.00
5. Stella Wan
🤞🤞🥰
$50.00
6. Tara Albertoni