A bath chair for Anna

Hi I am the mother of Anna Levon.  She will be 14 years old July 10, 2015.  She has a leukodystrophy which will never be cured.  Her condition is terminal however she is very much alive.  She was diagnosed with Krabbe' disease just before she was a year old.  Before her diagnosis she was meeting her milestones by feeding herself and sitting up and enjoying life like most kids.  Then one day, out of no where she fell over while sitting up watching one of her shows with her older sister.  Our hearts sank when we got the diagnosis and we made it our goal to privide her as comfortable of life as possible.   She has endured quite a bit of obsticles but with the focus of our goal to "keep her happy and comfortble" she has overcome them.  She loves to go to school and watch her movies, watch her dogs play and take walks in the nice weather. She loves the zoo and the Field Museum but most of all just hangin' with her family. The one thing Anna can never be without is her bling.  She has a bracelet fettish that has grown to quite a collection.  She is quite the fashionista and enjoys picking out the next day's outfit, sometimes making it a whole family affair.  
It is important for her to look her best and you can tell the pride she has when anyone compliments her on her wardrobe choice.  Her long beautiful blonde hair accents her ensamble but does pose a bit of problem for her care takers.  We live in a very modest home with just one bathroom.  It is small as well and though we have cosidered remodeling it, the costs and downtime are not feasable for us at this time.  Even though it isn't ideal, like always, we found a way to make it work.  We obtained a bath transfer system many years ago and though cumbersome, it served it purpose well.  It has now become a bit of a safety hazard with some broken parts.  Anna is in her teenage years (any mother of a child knows what that means :)) and without a proper cleaning she becomes anything but "fresh".  So you can imagine a bed bath just isn't going to cut it.  So we asked our insurance if we could have help purchasing a  new chair and of course the answer was "we do not cover that".  Without any other resources to call on we were directed to asking you for some help.  We were reluctant at first but as we were encourage to open up our story to others we felt we could stay forcused on our origional goal to provide Anna with  the best quality of life we could and if there could be a small contribution from many we could get this chair for her by her 14th birthday.  Here is the link to the chair system Anna needs.  As you can see it is not anything fancy but it would help her be more comfortable and give her parents peace of mind for the years to come.
 
http://www.columbiamedical.com/special-needs-disabilities-products-details.asp?ProductID=81&ReturnProductID=153 - 23.452 Kb - 2014/08/07 00:00:00

Thank you for listening and please don' t hesitate to contact us with any questions.  

                                 with all our love,
                                         
                                The Levons (Steve, Kelly, Erin and Anna