I have 2 little boys that have been diagnosed with Leukodystrophy. We have gone through a lot of testing in Okla. and our Doctors don’t really know what to do or know much about the disease. They have basically given up. There is a specialist in N. Carolina that is an expert on Leukodystrophies and his team is arranging a visit for our family, they think they can help my babies. They want to determine what type of “L” they have so they can be included in a study. In Europe they have some type of medicine that can cure a specific type of “L” and doctors can’t get it over here until they complete the study. They won’t be “testers” of the medicine or anything. I am a single mom who works full time and my mom stays at home to care for the kids. I have no idea how I will be able to afford gas, hotel, 1 week loss in pay, etc.....We live paycheck to paycheck and don’t really have a lot of money.Answer Question
Answer by Christinemg0813 at 8:59 AM on Nov. 5, 2008
Answer by Emmy_Dollface at 9:02 AM on Nov. 5, 2008
Ask your current doctor if there are any support groups for the illness and look to them. They might have fundraising options for you, especially if you are going to be in the new study. Or ask the doc in N. Carolina if the hospital the boys would be at has any assistance programs for funding. Have you tried contacting Ronald McDonald house? If nothing else, is your mom Internet savvy? Maybe she can do some networking to friends and family while you are at work and set up a free website to promote your cause and maybe you can get some private contributions. Even if each of your family members gave you $5, it would help, right? My heart goes out to you, I know nothing of Leukodystrophy, but as a mom, I couldn't imagine hearing news like this. Stay strong, you will find a way for this to work!
Answer by chillemi78 at 9:04 AM on Nov. 5, 2008
Answer by Kimebs at 10:31 AM on Nov. 5, 2008
Angel Flight America, Inc.--a national network of seven autonomous regional members --arranges free flights of hope and healing by transporting patients and their families in private planes to hospitals for medical treatment. http://www.angelflightamerica.org Kid Care (Northwest Airlines) - With KidCares, donated WorldPerks Â® miles are used to provide free air travel for a child, accompanied by one parent or guardian, to obtain needed medical treatment. http://www.nwa.com/corpinfo/aircares/about/kidcares.shtml
Answer by mom2aspclboy at 3:53 PM on Nov. 5, 2008
Miles for Kids in Need (through American Airlines) - For travel for children 18 years or younger and up to two accompanying adults. All requests must be referred through an approved non-profit agency http://www.aa.com/content/amrcorp/corporateInformation/facts/amrfoundation.jhtml
Miracle Flight for Kids - Since 1985, Miracle Flights for Kids ® has coordinated over 42,500 flights, providing over 20 million miles of free access to health care for America's families. http://www.miracleflights.com/
Answer by mom2aspclboy at 3:54 PM on Nov. 5, 2008
I don't know if you have joined this already... My child also has a rare condition and it really helps to join a group with other parents, its supportive and you can learn from treatments they have tried. Plus they may have advice or contacts for helping you get the medical assistance you need.
Answer by Serafyna at 10:18 PM on Nov. 5, 2008
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