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Home > An opportunity I can't afford...and I can't afford to miss.

An opportunity I can't afford...and I can't afford to miss.

June 8th, 2014 at 11:18 pm

My daughter Aukxsona was one of five children selected to go to a special camp for children with disabilities.

She has transverse myelitis.

Transverse Myelitis is a rare condition where the spinal cord has pieces missing. As you noticed in that picture she is standing. She can walk too now. She is a miracle in so many ways. When she was a baby she didn't walk and until she was six years old she hopped around. She fell down so much, it scared me to let her walk so I had to hold her hand as she hopped about. She had trouble toilet training and just recently got out of training pants. She couldn't walk well enough to get to the bathroom and her pelvic muscles were to weak to retain the urine. She now walks with braces that hide under her pants and goes to the toilet like a regular girl. She still can't feel her feet, but thanks to Shriner's she is getting better every day.

She is even being sponsored to go, the Transverse Mylelitis Association will sponsor her costs to go. However, they require a caregiver to go and the caregiver must pay $1200 to go. I thought the care giver might be sponsored as well..since it is a requirement for the child to go. Unfortunately it is not.

Does anyone have any idea how I can raise this money to go with her before August 9th? I know it seems so frivolous, but this is a huge opportunity and I really do not want her to miss it. She will be with other children like her, horse back riding, kayaking, zip lining. She will also have a chance to meet the director of the international Neurorehabilitation Institute and the assistant professor of Neurology from John Hopkins.

5 Responses to “An opportunity I can't afford...and I can't afford to miss.”

  1. creditcardfree Says:

    Oh, she has to go! What about crowd funding? There are a list of sites, which have small fees, at crowdfunding.com. I would definitely try one of those. I would also tell friends, family and coworkers, use Facebook or other social media to reach out to them. I will donate if you sign up at one of those sites. I have a friend with a daughter with spina bifida so I know how important these camps are.

    Otherwise...a garage sale, sell some furniture or something larger. Sign up for a cash back bonus rewards card if you can be responsible with the credit, avoid interest, ect. I would also see if there any expenses you currently have that you could cut out for the next few months that could be saved for the expense.

  2. LivingAlmostLarge Says:

    Ask foundations that help kids. Go to lions, key club, birthday wishes, etc. Any charities, or churches may give you a scholarship or an award for going. Also look into the public school system because they may know of ways to help you get money.

    You have to go. Your daughter looks great and has so far!

  3. CB in the City Says:

    Could you interest someone at the local paper to do a story on her? Then maybe you could set up a fund for donations. Keep us posted, I will donate also.

  4. ceejay74 Says:

    All great ideas. I agree, you should go if you can!

  5. My English Castle Says:

    Good ideas about the paper and crowd sourcing!

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