Marlowe's Web

We all have those moments when Rett seems to take over our girls completely. It gets intense and scary. That moment when you aren’t sure if you want to scream out in rage or sit in the corner and ball your eyes out. It was at that moment where our story began.

Marlowe, our almost 6 year-old, was in the hospital in February for aspiration pneumonia. The first of three times so far this year, the last being over Labor Day weekend. Watching her struggle to breathe, too weak to open her eyes, with skin pale as a ghost was my breaking point. I was tired of feeling helpless and watching her fight so hard on a daily basis. All of her symptoms had intensified and still continue to do so. She rarely smiled anymore because she was so miserable. Rett was winning and that made me so mad. I wasn’t willing to just sit around and do nothing. I felt a fire within me. I needed to get involved because I want that cure for her more than anything! She deserves way better than this.

So, I came up with the idea of signing up for a 5k run. I wasn’t sure I would be able to raise much money, but I knew anything would help. Deciding to use RSRT’s crowd funding site, I set up a RettGive Campaign, which was super easy to do! Our lives are often complex, so one thing that’s easy? Sign me up! RSRT was great at taking our ideas and polishing them, even inspiring us to strive for more. We came up with a goal of $10,000 in the end. We sent out emails, blasted our campaign all over social media and urged our friends and family to do the same. By race day we were just $500 short of our goal, and that to me was pretty amazing knowing how hard everyone works for their money. The MORE4MARLOWE crew had a fun time running and pushing Marlowe in her stroller. When we got to the end, I put her in her Upsee and she walked across the finish line with me. I thought, this is only the beginning.

The cool thing about fundraising is that you never know who you will reach. Having heard about the email I sent out to family about what I was doing, Marlowe’s 10 year-old cousin, Ava, decided to get involved. She'd been raising 4H hogs since winter and was going to donate whatever profits one of her pigs brought in at an auction to our campaign, hoping to contribute around $1,000. When she told us what she was going to do, we were completely blown away by her selfless act and cried tears of joy! Come auction day, word had gotten around about Marlowe and what Ava was doing to help. Twenty-two businesses came together and purchased the hog for $157 per lb! The average price that 4H pigs go for is $7-15 per lb, so this pig was the highest paid in Oregon State history. Ava and her pig contributed $40,000 to our campaign. Now, that’s some pig! And some kid!

Inspired by Ava, two more of Marlowe’s cousins, Annie and Noah, auctioned their pigs to add $7,000 more to our Campaign. The total for our RettGive campaign is now at almost $57,000! Our story has been shared over and over, it has been picked up by a news station, a reporter for a magazine wrote a very vivid and touching account of the auction, a national radio station also shared our story during a segment called “Good Kid of the Week.” The story even traveled to other counties’ 4H auctions and has inspired action.

You never know who will hear, whose hearts will be touched, who will want to help and the impact your campaign will have on funding research. If a couple kids and a couple pigs can do this… imagine what you can do?!

Get involved. Do whatever it takes. SHE IS WORTH IT! Fight for her like she fights daily because her story only begins with Rett Syndrome, it doesn’t end there.

Shoshanna & Mike Ramirez