One clarification (I've added it in below, but if you already read the e-mail, you might not see it: if you want to donate to James's trust, you'll need to make checks out to "The James Missey Special Needs Trust."
Hi everyone,
As you all know, the Step Up for Down Syndrome event in Forest Park (formerly the Buddy Walk) is the annual fundraiser for the Down Syndrome Association of Greater St. Louis. You all, and many of our friends, have helped us raise a little over $12,000 in the three years that we've put together a team for this event and raised money.
This year, we're going to try something a little different. Some of you have asked us since James was born if you could contribute directly to James. We have been working on planning for James's long-term needs for a while now; last year, we set up a special needs trust for James to begin to prepare for his future. Though James will likely continue to have many needs through his school years—therapies and camps especially, and we're crossing our fingers no more medical—the majority of his financial needs will come long after school is finished. As with all of our children, we can't predict what James's future will hold, but down the road we'll have to consider how independently James can live, or what his future care will be into his 40s and beyond, when Julie and I will be in our late 70s and 80s. Who his caregivers will be, where he will live, how his needs will be met—all of these are the long-term questions that we think about. How we will fund James's trust is an ongoing question that we're working on.
For those of you who are interested in doing so, this year instead of donating to the Down Syndrome Association of Greater St. Louis as part of Step Up for Down Syndrome (the June 13 walk in Forest Park) we are asking you to consider contributing to James's trust fund.
A special needs trust fund stipulates, among other things, that any money in the fund must be used for the individual beneficiary of the trust (in this case, James)—for education, for camps, for therapies, for medical care, for personal items (i.e. whatever thing James loves when he's 15 and wants to purchase for himself), for in-home care, for living facilities, for a traveling companion if that companion is a necessary part of a trip or visit, and so on. The special needs trust insures that James has money available to him for things he'll need without jeopardizing funds also available to him through the state.
Please know that we know this is a sensitive issue—we've wrestled with how to do this for a long time, which is partly the reason this e-mail is coming so late. We absolutely do not want anyone feeling uncomfortable about this; we know money is a sensitive issue. If donating to James's trust this year is something you are interested in, you can send the donation to us. Checks need to be made out to "The James Missey Special Needs Trust."
We have also set up a Firstgiving page, as we have in years past, if you would feel more comfortable donating to the DSAGSL. Our page is here: http://www.firstgiving.com/jamesmissey .
Of course, no donations at all are required to walk with us in Forest Park this weekend as part of the Step Up for Down Syndrome walk. The link for more specific information about times and activities is here: http://www.dsagsl.org/step-up-information/ . PLEASE NOTE THE NEW LOCATION THIS YEAR!!! It's not in the Muny Lot as it has been in years past.
As always, we're happy to have anyone walk with us, so bring along your friends and neighbors!
Finally, please know that we are so grateful for all of the support that has come from all of you in so many different ways. We feel blessed to know that we and James are so loved, and we know that James has lots and lots of "trustees" in his life to count on.
Thank you!
Steve and Julie
