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<p>Sigh. My daughter has a disorder called ataxia-telangiectasia (A-T). It is really rare (only 350ish families in the US) and as such there is little funding for research. We are lucky enough to have an amazing grassroots organization that was founded by an A-T dad about 15 years ago, and they are pretty much the sole source of funding for research into a cure or treatments for A-T- as of now there is no cure and over 50% of kids with A-T don't make it to 20years old :( The foundation is called the A-T children's project.</p>
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<p>Anyway, since my daughter's diagnosis, my immediate family has been incredible. My sisters and mom don't have a lot of money, but they both give time, energy and more to the project and we have done a lot of fundraising. My dad is incredibly busy but fairly well off, and he has donated incredible amounts of money to the foundation. More importantly, they have all been supportive and loving and helpful to my family. My MIL and BIL have also run marathons to raise money</p>
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<p>Here is my sadness. My extended family, except for my grandmother, has not donated anything- time or money. I hate to sound greedy but my relatives are very well off (yachts, etc)  and I KNOW that they could spare some change for the foundation. It has never bothered me before, but we had a bunch of family up to my dad's this thanksgiving, and I told them all about dd's new fundraising page and not one of them- not one- signed up to donate any money. I HATE asking people for money, but this is my daughter and I need my family to step up and at least make a token effort to help us find a cure. Its just hurtful. I know that no one owes my daughter anything, and everyone has the right to do what they want with their money, but it is just unfathomable to me that you could have a member of your family- a CHILD, nonetheless, with a terminal incurable disease, and not do anything to help.</p>
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<p>I am grateful for the wonderful support my immediate family has given me, but sometimes I feel like the seconds are ticking by and time is running out for my girl. She is still so young and if we could find a way to halt or slow the progression of her disease right now, she would be able to live a pretty "normal" life. I know a lot of you must go through the same types of feelings- how do you accept your family's unwillingness to accept or support your child's special needs? How do you stop yourself from feeling anger and resentment?</p>
 

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<p>I hear where  you are coming from. Just wanted to give :hug   So frustrating. I attempted to put  up a fundraiser on my facebook and not a single person responded. I ended up taking it down. Why have my kid's pic up on a public forum that might embarrass her in the future. What better cause than a child? Maybe you could put up a generic sentiment up on your facebook that you are disapointed in the response to the amount of people helping your group</p>
 

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<p>I have no answers but I understand your disappointment and frustration. You find out a lot about people when times are tough....and unfortunately with some people what you find out is not positive. </p>
 

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<p>I understand why you are hurting but you don't know the reasons behind their lack of donation.  Maybe they are struggling financially.  Many people appear to be well off but really aren't.  Since they aren't immediate family, maybe their funds and time that are earmarked for charity are being spent on a charity that is closer to their hearts?  I could understand more if these people were very close friends or immediate family but since they are extended family, I'd give them the benefit of the doubt.</p>
 
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