WHEELCHAIR VAN & RESPITE
Rachel is the oldest child in a family with 3 healthy, younger siblings. After a healthy early childhood we noticed that she was having problems in school and focusing which turned into vision problems and progressive loss of basic functioning. In 2009 my Rachel was diagnosed with Juvenile Batten Disease, which is a death sentance for the very few that have this unfortunate, genetic brain / nerve disease.
Rachel has gone completely blind and within the last few months has rapidly lost the abiity to walk without tremendous support from me. As she weighs nearly 200 pounds the used Lincoln Navigator I bought a few months ago is becoming obsolete. My ability to transfer her from her wheelchair to the Navigator is going to be gone completely (soon) as she loses more and more muscle stregnth. The fact that I can get her around safely at her size and weakness is a privilege for Rachel, the kids and myself.
VERY SOON Rachel will need to be driven to places strapped in her wheelchair and my family needs your help putting together the money in order to pay for this van. She is already taking the wheelchair to school on a special wheelchair accessible bus and they are dropping her off to respite 2 days a week. Picking her up from respite in the Navigator requires that I secure childcare for her younger siblings because the 60 minute round trip drive leaves me with only space for 3 children (plus me, the driver).
Aside from going completely blind and losing the ability to walk, Rachel is also losing the ability to speak, understand speech, gross and fine motor control as well as the abilities (or better yet the rights as a human being) to swallow, remember and think.
I hate asking for help, anyone who knows me knows how hard this was to write. I have raised tens of thousands for Juvenile Batten Disease Research, I have shaved my head (fundraising) for pediatric cancer and have donated to research for Cancer, MS, ALS and other charities.
This van will help Rachel continue to function as part of our family so we can do family outings, so she can be picked up from respite as well as take road trips to visit family and friends which she very much enjoys. More than any of that, a wheelchair van will ensure that Rachel will be able to visit her doctor as her health continues to deteriorate.
Please email me with any questions. Asking for help like this is just about the hardest thing I have ever done.
- Kat Vontungeln
PS I am going to be selling / trading in the 2001 Navigator when I get close to our goal.
I have kept the campaign open because I am having a very hard time getting help with respite here in Colorado but I have an awesome respite place called Megan's place who is helping give Rachel a fun place to go and me a bit of a break. They are also showering her as I broke my ankle the week before Halloween.
Thank you again.
I have been paying for her to go to a respite facility every week since August but I am desperate to get more help for her. Colorado hasn't exactly been "special needs friendly" - which was shocking, to say the least. I have been trying to get her approved through the Colorado DDRC (Developmentally Disabled Resource Center) since June and still no luck and we are pushing through October into November.
Thank you for your continued support as I get Rachel set-up in the home I rented a couple of weeks ago, a nice ranch that has a small step up into her bedroom's sliding glass door.
Thank you from Rachel. She truly is a wonderful young lady. She touches everyone who she meets. Never complains about her lot in life & loves to sing & laugh. Sadly she is losing her ability to walk & is in her wheelchair most of the time. She needs a wheelchair van to safely get her to the doctor & out with her3 siblings & Mom. Any amount you can spare will be put to buy the van.Thank you so very much from Rachel.