Friday, October 15, 2010

I need some advice

On October 30, we are participating in the First Annual Stroll.athon for Rett Syndrome in South Florida. This is the first fundraising event that we have taken part in.

When you have a child with Rett Syndrome (or any type of incurable special need) you feel very, very helpless. I take her to therapies, give her medicines, subject her to medical tests, and advocate for her at school but there is still only a small return on all of that investment. My child still doesn't always acknowledge me when I walk into the room. She refuses to play with me or allow me to help her. She needs help with every activity of daily life- eating, dressing, toileting, and even communicating. It's a labor of love and I do it every day, all day, because I love my girl so much.

This helpless feeling leads to advocacy. Raising awareness and fundraising for Rett Syndrome research is all I can do. Especially at this point in my life, where I am dealing with secondary infertility and wondering if I will ever have another child. Allison is it for me and I am going to do everything I can to give her the best life imaginable.

So, we are walking and raising funds for this event in two weeks.

This is what I need advice on. Our fundraising goal is $2,000. We have been working since August toward this goal. We have sent out messages and actually made a lot of progress. We have raised over $1,600 at this point. That is amazing and I am so grateful to all of our donors. What I am angry about, furious in fact about, is that only $300 have come from our family members.

Yes, that's right. And actually, $200 of those $300 have come from Allison's grandparents. So, from all of my aunts, uncles, cousins, my stepmother and stepsister, and all of Jason's aunts, uncles, and cousins (a combined total of approximately 70 family members) they have donated a grand total of $100. That was two donations.

I am so incredibly pissed off about this. These folks are not poor people. They have received messages from me via email and/or facebook. They say things like "Let me know if there is anything I can do to help..." or "I could never do what you do..." They are people who have never been solicited by me for money for Rett Syndrome.

These people, who are supposed to love and care for us and Allison, can't even donate $5 or $10. These folks don't even reply to my emails or posts with a "Good luck" or a "We'll be thinking about you on the 30th".

Gee.. I don't know why this makes me so upset, other than I guess I feel like they just don't care. I am feeling so helpless, and all I want is to feel like Allison's family supports her.

Can I do anything? Send another email? Post something snarky on Facebook? I feel like telling them all to go to hell, but I'm sure that's not very productive.

What would you do? Should I just calm down and let it be?


  1. hey there. we had the same issues too. we got donations from people we barely knew for 500 and then from family i have known my whole life who are like my 2nd parents-$50. and they are wealthy. i know you never know what is going on behind closed doors...but still, it stings. I like to think people give what they can but sometimes we are left wondering. i think (and this is just my opinion) all you can do is just let it go. Keep sending your emails out though! and if someone responds with "what can I do to help?" tell them to get out their wallet! :)

  2. I agree with Erica. Keep trying and sending out the emails and when people ask, tell them donate. Let them know that even the smallest amount of $10 would be helpful, but the more the better. Maybe they are under the impression that they would be obligated to donate higher amounts.? Just benefit of the doubt.

    Some people may not realize just how important it is too. So maybe if you posted or emailed what you are at now and that small donations by anyone would help, they would respond...? YOu probably have already done that though.

    Sorry its so frustrating. :(

  3. Hi! I just found your blog and it's nice to "meet" another member of the Rett family! :) I am sorry you are having frustrations with your family and I agree that I've been there also! Have you tried individual emails to specific people? I know that might be a lot but sometimes people intend to donate to mass emails but forget but can't hide from a direct request. Just a suggestion and thanks for sharing your blog!

  4. I hope the marathon goes well! I don't have any great suggestions on how to get them to donate, but I hope at least a few of them pull through for you.