Berkley’s Handicap Ready Van

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. 


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.


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