The K Story

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A story of a brave woman who fought extreme fatigue, seizures, and strokes, and

whose legacy survives to promote better understanding.

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>Question: What do the Kentucky Derby, Lilly Pulitzer® and MitoAction all have

in

>common?

>Answer: K .

>As we prepare for the 2nd annual K Derby Day Benefit for Mito,

we

>invite you to enjoy the history of this event and a peek into the life of the

>special woman for whom it is named.

>Join us May 7th at Mandarin Oriental, Boston to celebrate the Kentucky Derby &

>to support all who live with " Mito "

> Keery was 5 when, in 1961, Kennedy appeared in Life Magazine

>wearing a Lilly Pulitzer® shift. Jackie summered on the Cape. summered

on

>the Cape. It was all the connection a little girl needed to inform her fashion

>sense. For young , a clothing devotee in general, an affinity for the

fun,

>carefree, preppy look of Lilly Pulitzer® was born.

>Fast-forward to 1997, when, with her husband, businessman Gordon , the

>grown-up opened the first in the nation Lilly Pulitzer®

Signature

>Store. The shop, fittingly enough, is located on Nantucket, where the s

>had a second home. The s chose the name In the Pink for their store and

>then set out to expand to nine seaside locations from Cape Cod to the coast of

>Maine.

>In the Pink was squarely in the black, and life was going swimmingly for the

>s, who were raising their two sons, Buck and , and tending to

>their growing business. Then, in 2003, started complaining that she

>couldn't hear her customers well enough during busy moments in the store. Her

>husband was also noting that “she wasn't keeping up as well, lacking energy

and

>also focus.†Some years before, doctors uncovered in what

called

>a “leaky kidney – protein in her urine,†which was kept under control

with

>medication. No connection to mitochondrial disease was yet made.

>All still seemed normal enough when, in October 2004, suffered her first

>seizure and stroke, a full-blown affair during which she lost consciousness and

>that left her having a bit of trouble communicating. Her sons at the time were

>both freshmen – one in college, one in high school. spent 17 days in

>Brigham and Women’s Hospital but no apparent cause was found. Several months

>later she was diagnosed with mitochondrial encephalopathy with lactic acidosis

>and stroke-like symptoms, or MELAS. It's one of 43 types of mitochondrial

>disease that have been classified to date, all falling under the umbrella of

>muscular dystrophy and together striking more commonly than cystic fibrosis.

The

>mitochondria are the energy powerhouses of all the body's cells, and when they

>malfunction, the body doesn't work properly.

>In 's case, her brain wasn't getting the energy it needed to thrive and,

>as put it, “It was short-circuiting.†In hindsight, he had seen

>signs. “A hallmark of mitochondrial disorder is exercise intolerance and

>temperature intolerance,†he explained. “When we were dating, she had to

quit

>after a couple of games of tennis – even when she was beating me. I remember

>looking at her face – it was all flushed and red. This was back in 1983. In

>1987, I remember her pushing Buck in a baby carriage through some sand on a hot

>day. She stopped and said, ‘I think I'm having a heart attack.’ Again her

face

>was flushed. It was transitory but those were symptoms.

>On some level, she was fighting this for her entire life.

>“As far as the diagnosis, we were fortunate to get it as soon as we did,â€

> said. “Some people go years. It may sound odd, but even a horrible,

>life-ending diagnosis is better than not knowing.†At first, said,

“I

>was wildly searching for a cure. That's what you do when faced with something

>like this. I was up all night surfing the Internet. Then it dawned on me that I

>was wasting my time because there wasn't going to be anything I could do to

save

>. So I focused on managing her quality of life to the best degree

>possible,†which included shuttering the doors on a couple of In the Pink

shops

>to spend more time with his wife. Their locations shrunk from nine to six.

>“Other people have their golden years,†said. “I refer to that

period as

>'s golden months.â€

>Much of the help came from MitoAction, a Boston-based organization whose

mission

>is to improve the quality of life for people with mitochondrial disease through

>support, education, advocacy, and outreach initiatives.

>“The impetus behind starting MitoAction,†says Executive Director Cristy

>Balcells, herself the mother of a 7-year-old daughter with mitochondrial

>disease, “was that there was no resource, no organization providing the

>day-to-day support patients and their families need.†MitoAction's network of

>patients and their loved ones currently spans the United States, Australia, the

>United Kingdom, and Canada. " It's about quality of life, " she says.

>Support couldn't halt the course of the disease, however, and with each

seizure,

>which would come after a quiet plateau period, 's brain function

>deteriorated a bit more, from an estimated 97 percent after the first episode

to

>84 percent after the second, 73 percent after the third, and so on.

>succumbed to the disease on August 6, 2008, at age 52, a few months after Buck

>graduated from college and from high school. She was able to attend

>both her boys’ graduation ceremonies. In both her business and personal life

> was supremely driven and goal-oriented. Not only did she travel to North

>Carolina to take part in all the festivities surrounding Buck’s graduation,

she

>planned, prepared, and hosted a graduation dinner for her “baby,†,

at

>their home in Wellesley. Weeks later she entered the hospital for the last

time.

>As says,“’s boys were her life; she put her heart and soul

into

>raising them to be great young men. She knew she had accomplished her most

>important goal.â€

>It wasn't long after that Balcells asked to be on MitoAction's board of

>directors. She had gotten to know him and his wife well, often visiting when

> was in the hospital.

>After hearing stories about how loved to celebrate the arrival of spring

>by hosting annual parties at their home on Kentucky Derby Day, MitoAction

>decided to use this as inspiration to create an annual fundraising event. And

so

>the K Derby Day Benefit for Mito was launched in 2010 in honor

of

>.

>Simultaneously, Gordon mentioned to Janie Schoenborn, whom he calls “the big

>mucky-muck for design†at Lilly Pulitzer®, that “any time I see images

depicting

>a mitochondrion or the human genome, I'm struck by the color and shape of these

>things that I'm looking at. They remind me of Lilly prints.†Schoenborn asked

>him to show her what he meant, so he sent her about a dozen images of

>mitochondrial cells and human genome components. Schoenborn and her design team

>got to work and a beautiful Lilly Pulitzer® silk blend “Mito Murfee†scarf

of

>hot reds, deep blue, tropical greens, and pale pink was born. A depiction of

>mitochondria appears in the red flowers (and, true to Lilly, you have to be

“in

>the know†to recognize it), while the green ribbons of color represent the

>awareness icon for mitochondrial disease. The human genome is in there, too.

The

>limited-edition scarf was launched at the 2010 SKR Derby Day Benefit and became

>available at all In the Pink locations and on inthepinkonline.com. All net

>profits of each scarf support MitoAction.

>At the 2011 SKR Derby Day Benefit for Mito at Mandarin Oriental, Boston, Lilly

>Pulitzer® will debut its new Mito Tote. Once again all net proceeds will

benefit

>MitoAction and the tote will be available at all In the Pink locations

>and inthepinkonline.com.

>Talk about fashion forward. would have liked that.

>

>Purchase your tickets today to the 2011 K Derby Day Benefit for

>Mito on Saturday, May 7, at Mandarin Oriental, Boston!

>

>Cocktails Courtesy of Grey Goose Vodka.

>Special Thanks to our Winner's Circle Sponsor Choate, Hall & and our

>additional sponsors Lilly Pulitzer, WHDH-NBC, America's Compounding Center and

>In The Pink.

>

>

>

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