Hello fellow angels

My name is Beth & I am new to the board. I am trying to find some resources for an 8 year old little girl that her mother is a member of our support group. She was diagnosed a week before Christmas with a terminal disorder call Mitochondrial Disorder Complex 1. It is a rare, progressive and degenerative disorder in which there is no discovered cure or treatment (yet). Statistically, most children do not make it to see their teenage years & by age 8, most are already blind, deaf or had major organ failure. The doctors have pretty much told the parents "Just make her happy while you have her" The family found this out a week before Christmas. Needless to say, their lives have been shattered & they have had a difficult time since.

The little ones doctors contacted Make a wish & she was granted a wish. Her greatest wish was to swim with the dolpins, visit the beach & go to Disney however Make a wish was only able to cover her trip to Disney world. They consider the beach a second wish & were unable to cover even a couple of nights lodging at the beach. Make a wish policy states only one primary wish, which is completely understandable.

Here is my situation. This little one has touched my heart & I want to help her any way possible to make her wishes all come true. I have feel in love with this little one, and fortunatly, I have a wonderful friend that owns a vacation rental on Cocoa beach in Florida. She has offered this little one a weeks lodging on the beach, at no charge.

The problem is, Make a wish is unable to cover the van rental for an additional week & the parents finances is not well. The little girl has had several conditions since birth including CP and epilepsy, & has spend most of her life in the hospital. She has been crippled severly since she was a baby. When she was diagnosed, the mother had to leave her work to care for the little one & the father has parkinson't so he is unable to work & medical travel has taken up all of their savings. She must travel to Atlanta and Cleveland often to specialists which gets expensive so the family is in financial crises at the moment. The would not be able to afford the additional weeks van rental.

I contacted Make a wish and if I can work something out, they will keep the van in their name the entire time so the family can get the discounted rate through make a wish. They will cover 1 week of the rental, & then the family must give make a wish, the additional weeks rental. They have offered a discounted rate for the week of $379.

My question is, does anyone know if any other organization or other places, that may help cover the additional week? I have tried calling the rental companies to see if they are willing to donate, but none was able. I have contacted every organization available, explained that they have all the verification neccessary to provide & if they could help, they could send directly to Make a wish in her name, but none have been able to help.

I would happily cover it myself if I could, but unfortunatly, I am not in the financial shape myself. I have been fighting cancer & it has dropped my income to where I have none to spare. I have offered $20 donation fo that brings the amount needed down to $359.

I would just advise the family to see if it was possible to put off the week until next year problem is, with this disorder, the little one may not have another year & I want to do all I can to make this happen for her.

I was wondering if anyone had any resources that they may point me to. Any ideas or suggestions are appreciated. I am open for anything.

Also, the littl one just recovered from a surgery in which they attempted to straiten her crppling, in hope that she may eventually walk & it worked well. She is still severely crippled, but she is strater which has added an inch or two, which has made her clothing too short for her. It's a miraculous thing, but unfortunatly, she has very few clothes that fit her now & is in need of clothing. The mother has tried finding clothing banks in her area, but it is a small area & there is only one clothing bank there, but she was unable to find much.

Anyway, if anyone could point me to anywhere that may help with this, I would greatly appreciate it more than you know. She has stolen my heart & I just want to make this a trip to remember for her.

You can visit her caring bridge page at

www.caringbridge.org/visit/macysparade

if you would like to learn more about this little one.

May God bless & thanks
Beth