Over the course of the last year since our daughter’s terminal Spinal Muscular Atrophy (SMA) diagnosis, we have been recipients of countless acts of kindness, from both friends and complete strangers. They are often small, simple gestures, but in the wake of enormous heartache, they shine brightly and continually lift our spirits. Since embarking on this 5,000 mile cross country journey to raise awareness about SMA and launching our campaign http://SponsorAMile.com, we have encountered so much unsolicited generosity that we feel truly humbled and are often left speechless. These acts of kindness are a beautiful reminder of the impact each individual can have and of the goodness in the world.
Lemonade Stand:
We received the most heartwarming email from our blog friend Lisa about the wonderful gesture her darling children created to benefit the Gwendolyn Strong Foundation. The Prokopetz family live in Canada and July 1st is Canada Day. As part of their celebration, sweet Matthew and Sidney asked their parents if they could organize a lemonade stand for “Baby Gwendolyn”, as they call her. They made juice and lemonade, created a booth for their front lawn, and decorated it with a sign that read, “Lemonade 25 cents, All proceeds to the Gwendolyn Strong Foundation”. Just seeing the picture of their smiles, so proud of their efforts, made us burst into tears. And Lisa’s email about it all left us simply speechless:
Your family has inspired us to be better, to do better…We thank you from the bottom of our hearts for helping us realize what the really important things in life are; and now we will continue to pass this message on.
No, Prokopetz family, thank you! This beautiful act of kindness reminds us what an important impact each person can have on another and you have inspired us!
Elementary School:
Barb Meland, known as “Nana Barb” in SMA circles and to her darling grandson Drew, and her students at Mounds Park Academy have touched our hearts. She is a first grade teacher in St. Paul, Minnesota. At the end of the school year one of the parents asked what she would like as an end-of-year gift. She responded that there was nothing that she wanted or needed, but that her family would be honored if they wanted to donate to the cause of SMA. The families of the 16 children in her classroom donated a total of $140 and Nana Barb chose to sponsor 14 of Gwendolyn’s Sponsor-A-Mile (http://SponsorAMile.com) miles to help END SMA. From the bottom of our hearts, thank you to Nana Barb and thank you to each and every one of the families at Mounds Park Academy who donated. Together, we will work towards raising awareness about SMA and funding research to end it once and for all!
Sedona, AZ:
Rancho Sedona RV Park. A beautiful RV park nestled in a forest of shade-trees with Oak Creek running through it, the red rock formations surrounding it, and the one-of-a-kind town of Sedona walking distance from it. When we arrived, we knew it was going to be a perfect place to explore Sedona from, but we never expected anything more than that.
In the morning we went over to the office to check in and, as we always do, we took http://SponsorAMile.com and http://PetitionToCureSMA.com fliers to ask if they would post them around the park. Not only did the manager, Joni, agree to do that, but she was so moved by Gwendolyn’s story and our cross-country drive to END SMA that she convinced the owners, Marg and Jerry Frye, to donate the two nights stay as part of our http://SponsorAMile.com fundraiser and offered to INSIST that anyone checking in during our stay donate to our cause as well. To say the least, we were truly touched and once again humbled.
Later that same day, there was a knock on our RV door when we got back in from town. We couldn’t believe it. Joni handed us an envelope with 13 names and site numbers on it – all people that she had collected from that day. Joni didn’t stop there. The next morning we went to check out and Joni handed me another envelope filled with donations she had collected that morning from other visitors as well as Rancho Sedona employees. She also promised to continue collecting and that we should expect more donations from Rancho Sedona RV Park in the future.
East Texas:
Where do we even begin with what we just experienced in East Texas? It all began with the wonderful front-page article Cheril Vernon wrote for the Palestine-Herald. During the phone interview she mentioned an opportunity for us to speak publicly and we quickly said we would absolutely be interested, but never held out much hope for this to come to fruition. Really, who wants to hear us speak on a random Tuesday at 10:30 am? Well, Ms. Vernon was true to her word and, with a second write up about us in the paper and following a personal phone call, rallied the Texas State Railroad Palestine Depot to be involved. Lori Pennington, of the Palestine Depot, took us on with full vigor and created a media event on our behalf. Ms. Pennington went above and beyond to make us feel welcomed in Palestine and that our message is important. She had the Depot bring out their special blue “Little Engine That Could” train for Gwendolyn (and Gwendolyn loved hearing the whistle). They also prepared a darling gift bag for Gwendolyn, which she just adores. To our amazement CBS and ABC networks filmed the event and interviewed us for their nightly news, Cheril Vernon did an additional story, and KYYK-98.3FM radio did an on-air interview. A crowd also warmly greeted us, including the Palestine mayor, Bob Herrington. We spoke briefly about SMA, Gwendolyn, and our belief that through awareness, SMA will go from being on the cusp of a cure to a curable disease.
Following this whirlwind, as we spent the rest of the day exploring this historic town, we were continually greeted by different people, wished well, and handed donations. When we returned home to “R” Place RV Park, the owners Melinda and Peter greeted us with heartfelt kindness and word that they wanted to help by donating our entire stay with them to our drive. They also personally asked the other campers to contribute to http://SponsorAMile.com and handed out fliers about the petition, http://PetitionToCureSMA.com. We had knocks on the door all evening from strangers who wanted to help.
These are just a few of the types of good deeds we have been witness to and been touched by. Although most people feel they are not doing much, collectively these acts of kindness make an instrumental difference – and they make an enormous difference to us! Instead of simply commenting about how sad the situation is, these people have taken action in a selfless way. It is gestures such as these that have moved SMA research from limited to on the forefront of a cure. The power of each individual action can and will change the outcome of this terminal disease – giving countless children the future they so deserve!!!