Maria Raises Awareness and Funds for TM Research in Massachusetts
Leslie Cerio

My daughter, Maria, is eight years old.  She was diagnosed with C-2 transverse myelitis at the age of three.  Last spring, our approach to TM changed.  Until then, TM was essentially a private matter.  In an effort to mainstream Maria, we chose not to announce our TM issues.  However, more than four years out from Maria’s onset, the time finally seemed ripe to start talking about it.  Encouraged by a few friends who took our very personal cause to heart, we embarked upon our first fundraising efforts.

I was invited by friends who are members of an organization called the “Mothers Club” to speak at their spring fundraiser, a dinner intended as a ladies night out at the local country club.  The highlight of the evening was a fashion show featuring local boutiques and a raffle of gift baskets featuring donations from individuals, as well as local businesses.  The “models” were mostly friends and acquaintances (including mothers, fathers and children), as well as my own kids. In the past, this event was a fundraiser for the local food pantry.  This would be the first time there would be a guest speaker – me.  It was the first time I had ever spoken publicly about TM.  I chose to do so for two reasons:  first, I believe with every fiber of my being that the outcome of a TM diagnosis can change in my lifetime, in Maria’s lifetime, if science is supported; secondly, I wanted to answer any questions in the community about why Maria walks funny and to reveal her as the hero I think that she is.  Both reasons, from my perspective, had the prospect of making Maria’s life easier.

However, I confess that I probably would never have chosen either this forum (yikes, the country club) or this topic, let alone the publicity, without abundant, overwhelming support from friends.  I was reminded of the lesson I learned from the days when Maria was in the hospital:  people like to help; it makes them feel good.  Even more importantly, I would not have gone public with TM without Maria’s endorsement.  And while I debated whether Maria and TM should be featured in a newspaper article, Maria saw the issue clearly:  “Maybe if someone else is sick, even a grown-up, they’ll realize they’re not alone,” she told me.  While I had long debated the other question, what kind of fundraiser would be an appropriate kick-off to TM awareness, Maria immediately appreciated the fashion element of our event.  She is, after all, the same child who required her neurologists to do rounds wearing a leopard or cheetah accessory. (In my house of three girls, the leopard phase is starting to fade now, only somewhat.)

In addition to the fashion show, friends organized a “Transverse Myelitis Awareness Week” at Maria’s school.  This week’s events featured a raffle of donated toys, gift certificates and computer games.  The principal of the school also spoke on the school TV about our cause and gave the children who were appearing in the fashion show an opportunity to speak about their efforts.  The week culminated in a sale of TM wristbands.  Maria and her older sister, Gabriella, came home reporting long lines of kids and teachers alike who wanted to purchase the wristbands.

So how did it all end, you might ask? Two hundred fifty women attended the fashion show – a record for this event.  Maria was the first to strut down the catwalk, blowing kisses to all in the room.  Our synchronized events raised about $5,000.  I didn’t cry during my speech or the accompanying slideshow depicting Maria in the medieval hospital wheelchair and then, four years later, climbing monkey bars.  And I learned again that it takes a village….