One local mama’s quest to fund research on her daughter’s illness
“From the day Ella got diagnosed I have wanted to do something, anything, to make my baby better.” These are the words of Laurel Ackerman, a local mama-turned-determined-fundraiser. Laurel’s daughter is fighting a disease called Langerhas Cell Histiocytosis (LCH or Histio), which has entailed two years of chemotherapy treatments, constant pokes, surgeries, anesthesia, you name it.
LCH is a rare, and potentially deadly, illness, so rare in fact, that it is considered an “orphan” disease, meaning the research doesn’t receive government-generated funds. Families and friends, determined to fund the cure, support the work of doctors and researchers. LCH is not a cancer, but it is treated with cancer drugs simply because it doesn’t have its own medicines—yet.
It’s that “yet” that motivates Ackerman to get into fundraising gear. “There is some very promising research on the way that may cure this disease completely very soon,” says Ackerman. “Going through this process, we have learned a lot of lessons about ‘one day at a time,’ and adaptability and all that. But still. The problem is, we need (a cure) now.” What Ella and the many other kids fighting this desperately need now are appropriate, effective treatments designed to treat Histio. (Roughly 15 local children are afflicted, according to Ackerman, though exact numbers are hard to pin down due to privacy concerns).
Through the national histiocytosis association, Ackerman, her husband Daniel Carrasco, and a group of families, friends and researchers, recently climbed to the top of Yosemite’s Half Dome as a way to raise money. This is no 5K: it’s an 18-mile hike, including an endless granite staircase and 900-foot ascent that requires serious rapelling skills.
The hike raised both funds and spirits, more than doubling the group’s goal of raising $100 thousand for Histio research. The amount raised will fund five research projects, putting doctors more than a year ahead of schedule. For families facing the urgency of time, this result gives promise and optimism. Over the next couple months the results of this effort will be that LCH can be looked at (and treated) in a completely different way than before.
“A lot of people were talking about the metaphorical connection of hiking Half Dome. The whole time you are pulling yourself up that mountain, you are screaming to yourself, ‘I can’t do this!!’ But you really have no choice: too much is riding on (your efforts). When your kid gets sick, you wake up every day and deal with it. People tell you how strong you are, but really, what choice do we have?”
Ackerman’s choice is to continue her fundraising journey, to find a cure for Ella and for all the children and families she has met along the way. She teamed up with Julie Rohrer, another local parent whose daughter also has LCH, to develop “Portland Grows a Cure” on November 17, a day when dozens of local retailers will donate a portion of their proceeds to the cause.
Wary of feeling she would constantly be asking the same individuals, Ackerman targeted small local businesses for help. Portland businesses proved to be generous and community minded. Next up is corporate sponsorship. “I figure, if I can show that businesses all across Portland care, then maybe I can get the big guys to care too.”
“Compared with calling up complete strangers and telling them Ella’s story, asking for donations, hiking Half Dome was easy,” says Ackerman. “But after a little taste, I can’t let this go. I am convinced that this is the quickest road to healing Ella, and I’m not going to stop until we have some answers, some real meds, and this disease is dead.”
Please check out the listing of all the retailers participating in Portland Grows a Cure on the inside cover. You can also check the website of Laurel Ackerman’s children’s shop, www.bellastellaresale.com for updates on Ella and the fundraising effort.
About Histiocytosis
Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. Langerhans cell histiocytosis (LCH) is a rare disorder that primarily affects children.
In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and radiation. Unlike cancer, histiocytosis sometimes goes into remission without treatment.
The vast majority of people diagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages. It is approximated that histiocytosis affects 1 in 200,000 U.S. born children born each year.
