Fundraising

Posted Jul 30, 2010 8:45am

Dear friends and family,

As most of you know Kaden is still struggling to beat this thing. His little body is growing tired of constantly compensating for his irregular autonomic system. We were planning on surgery to repair his cleft in early September but have been instructed to wait because he simply isn't stable enough. Kaden is showing more and more signs of POTS (Postural Orthostatic Tachycardia Syndrome and is having many swings in his vitals. He is struggling with all of these weird symptoms and is in whats called an "autonomic storm". After 3 years of trying to advocate for our little man, we found an organization called DYNA Kids (Dysautonomia Youth Network of America). With the help of the president, Debra Dominelli, we found a very special doctor in Virginia named Dr. Abdallah. He is a dysautonomia specialist that has succesfully treated children into their 20's. His son is also plagued with this disease and we reached out to him for help. I emailed him about Kaden and was informed that there are currently about 22 families in the United States that have a child with the specific form of dysautonomia that Kaden has. Dr. Abdallah is confident that he can save Kaden and give him a good quality of life. We started researching different organizations to help us financially fund the trip and none of them are able to help. The National Patient Travel Center in conjuction with Angels With Wings (Can only help within a 1000 mile radius), Mercy Medical Airlift (can't help because they need a letter of clearance stating he is stable which he's not), Air Ambulance (Insurance won't pay) and Amtrack ($1400 each way) aren't even able to help us with the trip. The trip is too far to drive in Kaden's fragile state unless we had an R.V. and ambulance would cost $15000. Our only option at this point is to fly with a nurse, rent a car and when we arrive stay at the Ronal McDonald house for lodging. Dr. Abdallah wants to see Kaden on August 16th but knows we're trying to raise funds for this trip. Unfortunately time is of the essence. So with a very humble heart Brian and I ask you all this....Is there anything anyone can do to help? We'd be more than happy to write receipts for tax purposes for this charitable cause. Our ideas for fundraising so far (with the brain storming of many friends and family) are the following:
Churches...Even $1.00 from each church family can get us there.
A car wash...
Possible donation of an R.V. to borrow for the trip?
Talking to the local news stations (Thank you Lisa for emailing them)
Contacting Shriner's, the Masons, and other organizations
Garage sales, or donations of items I can sell on Craigslist etc.
We are more than happy to trade services for funding once Kaden is stable. Brian is a great handy man and can do just about anything. I can watch kiddos, teach voice lessons, help drive kids to school etc. Also, we have a 1980 Yamaha Motorcycle available and a diamond ring that I already tried selling. Please let me know if there is anything you can do to help or know anyone able to help whether it be financially, with fundraising, spreading the word, organizing, but most importantly with PRAYER. For all of you believers out there, please spread the word and pray for our son. For those of you that don't pray, please send good thoughts our way. This experience is very humbling and we don't mean any offense, but I'd rather know that we at least tried to raise the money rather than sat here watching our son wither away beacuse we were too prideful to ask for help. We are running out of time. Thank you for anything you can do and know that we appreciate all of the prayers, support, good thoughts, and advocacy. May God bless you all.