The days and months after we received the Rett Syndrome diagnosis for our young daughter, Natalie, were the darkest of our lives. There were times that the grief felt insurmountable, that we’d spend the rest of our lives in this shroud of hopelessness. We kept this mostly to ourselves, save for family and some very close friends, and put all of our efforts into making sure Natalie was receiving the proper care and therapy to help mitigate the symptoms of this terrible syndrome as much as possible. In that time, we met Monica and Tim from RSRT over the phone. They had more information about Rett Syndrome and the research behind a cure than any specialist we’d met to date. They were optimistic. For the first time since diagnosis day, we’d felt hope. Hope for a cure for our Natalie.
Weeks passed after our call with Tim and Monica. We’d asked how we could help, and they’d made it simple: they needed funding for their Roadmap to a Cure. Fundraising meant we had to tell the world – or our piece of the world – our news. We’d have to expose our grief and the darkness in which we’d been living. But, we believe so strongly in the research RSRT is funding. We believe, wholeheartedly, that a cure is possible. To expose the rawness of our lives and share our story is just a small price in exchange for making a difference for this community – for our daughter. We set up a RettGive campaign and shared it with the small group that already knew what we were battling. One evening, exhausted from hours of crying, we decided it was time to stop waiting. Every day that we delayed in raising funds for research was potentially costing us another day closer to the cure. We used our RettGive page to share the news with our friends on social media – simultaneously telling our community what was going on in our lives, and giving them a way to help without having to ask.
The response we received from our community was astounding. Words of comfort, encouragement and prayer poured in. We had an overwhelming response to Natalie's RettGive page and in just over a week, we had to increase our goal of $10,000 to $15,000. Five months later, Natalie’s campaign has raised nearly $27,000. Our community shared Natalie’s story with their friends and family, and the support spread like wildfire. We even had a friend donate countless hours to hand-crochet “mingos” (Natalie’s favorite animal) to order – she took almost 350 orders and helped us raise over $4,500. Another friend hosted a craft show at her family’s restaurant and donated raffle ticket sales and all gratuity to Natalie’s RettGive page. Both of these are examples of things we never anticipated – couldn’t even have imagined – in the days before we shared Natalie’s news. Our supporters have helped us make a difference in a time when we felt so powerless. Complete strangers reached out with kind words and donations. They didn’t have to, but they did.
In a time in our lives when everything felt so dark, the response we had to our fundraising efforts were the light we needed. They lit the fire of hope that was started when we found RSRT. We’re not quite 6 months in, and are excited for what’s to come this year for our fundraising, for the research, and for our sweet Natalie. My hope is that any family that is currently struggling in the darkness, searching for a light, will take the small step of starting a RettGive campaign – it may just be the spark you need to ignite your hope.
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