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Berkley’s Handicap Ready Van

$27,780 of $50,000 goal

Raised by 194 people in 6 months
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Hi friends, family, and neighbors.  We need your help.  As most of you know, or for those of you who don’t, our daughter Berkley has a very unique neurological disorder known as Rett Syndrome.  Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child's life: their ability to speak, walk, eat, and even breathe easily.

We started noticing some significant changes in her around the age of 12 months.  Changes that were terrifying to be blunt.  She had about 4 words, was able to feed herself, drink out of a sippy cup, and play with her toys as any typically developing 1 year old would do.  We started noticing she was having a really hard time picking up her cereal and holding onto her drinking cup.  She would look at it as if she had no clue what to do.  She stopped playing with all her toys and began rocking back and forth making odd vocalizations.  Then the words stopped.  Rett Syndrome had reared is ugly head and was beginning to take everything from her.  Next the biting started, which now we know is a terrible regression phase the girls experience as all of their skills are literally leaving their bodies.  Berkley was frustrated, angry, and confused as she was now trapped in a body that did not work. 

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As new parents, we were devastated when we got the news in February of 2012 that our daughter had Rett Syndrome.  Life from that moment was never the same.  We were in uncharted territory, thrown into a world of therapies, wheelchairs, standing apparatuses, orthotics, seizures, scoliosis, EKGs, EEGs, an abundance of medications, GI specialists, positioning chairs, and Rett Specialists.  There was a period during 2012 that was very dark and crippling for Jeremy and I as we felt a sadness that no one should ever have to feel, a feeling of isolation as we were not quite like everyone else, and a devastation of knowing that our precious, perfect Berkley would never be able to have the life we dreamed for her.


Fast forward 7 years later, our Berkley is in 3rd grade in a general education classroom with a wonderful group of friends who adore her.  She has a team at school who has molded her into an exceptional student and are able to communicate with her with a communication device that works off Berkley’s eye gaze called a Tobii.  We are still participating in private therapies as well as therapies in the school system.  We are also in the process of getting an actual wheelchair for Berkley as her needs for seating have recently changed.  With Berkley now being 8 years old she is 4’2 and weighs 54 pounds.  She needs a bigger chair with more supportive seating as our girls are very prone to scoliosis.  This means her new chair will have side laterals to help her sit up straight, a mount attached for her Tobii communication device, harness straps for safety and seizures, and a connection on the bottom to be handicap van accessible. 

Below is a video we have put together so you can see what Rett Syndrome looks like and some of the moments Berkley has to manage on a daily basis. 



So here is where we need your help.  We need to raise $ for a handicap accessible van to be able to transport Berkley in her new wheelchair.  We were stunned at the price of these vans when we started researching and decided the only way to get this done, and to get it done right, was to ask for help.  This van would not only allow Berkley appropriate seating for her needs, but also allow her access to her Tobii/voice as it will be mounted on the chair.  This van would also help our entire family as it would eliminate having to lift her in and out of the car.  We have looked into insurance and grant money for this particular item with zero luck.  Our insurance will hopefully assist with the wheelchair portion, but not the vehicle, and unfortunately the state of TN does not have any grants for this type of item.  Tax breaks on the conversion, yes, but not grant money.

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Here is where you come in…we need you to donate.  We need you to share this link to all of your friends on Facebook, Twitter, Instagram, and your places of employment!  Share to everyone you can think of! Talk to your companies, bosses, churches, and spread the word about Rett Syndrome and Berkley’s needs.   This is a devastating disorder for our girls and researchers are working tirelessly to alleviate some of the symptoms and eventually find a cure.  Please join us in making this need a reality for our family.  Thank you….now SHARE, SHARE, SHARE!!!!

Love you all,

The Saynes
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We want to thank you all from the bottom of our hearts for all the love and donations that poured out to our family to raise the funds for our new van. Thanks to you ALL, we were able to get exactly what wanted and the option that made the most since for Bee. We are grateful that we do not have to lift a heavy wheelchair in and out of a truck. We are grateful to not get soaked in the rain anymore loading Bee and equipment. We are grateful for a safe and reliable vehicle for Bee and we are touched by the smile on her face as she gets to roll in and out of HER RIDE! To each and every one of you who gave, helped organize fundraisers, make posters, gather silent auction items, sent words of encouragement, and just kept us going through prayer and motivation...WE THANK YOU. I pray that God blesses each and every one of you with good friends and family to help you through the hard times and cheer you on when you are close to the finish line! We love you all and could not have done this without you!
Praise Jesus!!!!

Love,
Jeremy, Christy, Berkley, and Charlie
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We wanted you all to see what a day in our lives looked like. The lifting in and out for Berkley, the pulling and tugging of equipment in and out of the truck, getting soaked when it rained and, not pictured....laying on a heating pad at the end of the day!
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Friends...the time has come! The wheelchair is in! We have found the VAN!!!! Last push tonight and tomorrow! We are purchasing this weekend as our truck is about to die and so is mamas back!!!!
If you wanted to give now is the time! Trying to get all of the final funds we can before buying!!! Help us out guys....ON LAST PUSH FOR BEES WHEELS!!!!!
Love you all!!!
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Y’all!!! We have officially HIT THE HALFWAY MARK!!!!!
This is unreal! Thank you all so much! Let’s keep this thing rolling! Keep sharing and praying! Love you all!!!!! We are so so so close!
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$27,780 of $50,000 goal

Raised by 194 people in 6 months
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AN
$100
Andrea’s Nanny
1 month ago
$1,000
Anonymous
3 months ago
EG
$20
Elizabeth Grant
3 months ago
$50
Anonymous
3 months ago
SY
$25
Stephanie York
4 months ago
AB
$50
Andrea Branoff
4 months ago
KZ
$30
Kristina Zirschky
4 months ago
AG
$25
Amber Grant
4 months ago
$50
Michelle Begley
4 months ago
$300
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4 months ago
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