You're Invited! Raffle and Buddy Walk

We had a busy, productive Labor Day weekend. House projects, cleaning, laundry, soccer, lots of backyard "playground" -- and we capped it off with a cookout and s'mores. As I was cleaning up and listening to Greg and the kids laughing in the backyard, swinging, sticky with marshmallows and itchy from mosquitoes, I was struck by the incredible difference a year makes. We spent this summer making up for the paucity of the last one when we never left Baltimore, spent 40 nights in the hospital, and saw the worst side effects of Hope's treatment.

August, 2014

August, 2015

Tonight's sweet end to summer is, however, bittersweet for us, because it's impossible to forget the children we know who are, right now, on the 11th floor of Hopkins Children's Center. Three beautiful children with Down syndrome and leukemia, and their parents and siblings, who have not spent long hot days at the beach this summer, have not eaten dripping ice cream cones as fast as they could while cracking up at the mess, have not marveled at the Grand Canyon and the startling beauty of the desert, have not gotten a new lunch box or cool binder in anticipation of the first day of school.

These families need our help -- our prayers, our support, and our love. They need to know that we are thinking of them and pulling for them -- that they are never forgotten as we go about the magnificent normalcy of life. Because, truly, it's the loneliness of critical illness that is its greatest under-appreciated sorrow.

In 2014, Hope and then a second little girl in our local Down syndrome community named Amanda were diagnosed with acute lymphoblastic leukemia. (Children with Down syndrome are 20-30 times more likely to get leukemia than typical kids. You can learn more about that devastating link here.) In response, our local Down syndrome organization, the Chesapeake Down Syndrome Parent Group established the Amanda-Hope Medical Assistance Program to provide financial support to families in the Baltimore metro region who have children with Down syndrome and leukemia. This support can help alleviate some of the practical challenges these families face because of lost wages due to lengthy hospitalizations and long days in clinic and overwhelming medical expenses. It also lets families know that they are not alone.

The need is immediate, with three new diagnoses in 2015. To replenish the fund, CDSPG is having a raffle, with a top prize of an iPad! Tickets are 1/$2 or 3/$5. The drawing will be held at the Baltimore Buddy Walk on October 4 (but you do not need to be present to win). You can buy tickets here - or  you can mail me a check made payable to Chesapeake Down Syndrome Parent Group (357 Rosebank Ave., Baltimore MD 21212).

Thanks so much for your support!

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And since I mentioned the Buddy Walk...

The 2nd Annual Baltimore Buddy Walk/5K will be held on Sunday, October 4 at 9 am at Rash Field at Baltimore's Inner Harbor. Buddy Walks are held all over the country in October, Down Syndrome Awareness Month, to promote acceptance and inclusion of individuals with Down syndrome, as well as to raise much needed funds for local Down syndrome organizations. CDSPG performs many important functions for our region including education seminars, sibling support, programming for individuals with Ds of all ages, medical outreach, and parent support, particularly for new prenatal and postnatal diagnoses.

Our family would love to have you join us for an amazing day of community, fun, food, music, and kids' activities! Please consider either joining or donating to Team Hope for the Future!