Friends and friends of friends aim to find cure for little-known Batten disease

Above / Friends of Charlotte Gray, age 4, daughter of former Naperville resident Kristen Kaiser Gray, have signed onto a national campaign to help fund research for the life-limiting Batten disease that threatens her young life.

UPDATE, Aug. 16, 2015 / According to Julie Chirico, a local event is planned on Sat., Oct. 3, at Embassy Suites to raise funds and awareness about Batten Disease.

For more information or to purchase tickets ($150 each), call (630) 369-9070 or email napercurebatten@gmail.com. Tickets also can be purchased online at https://curebatten.ejoinme.org/naperville. RSVP by Sept. 25.

UPDATE, July 9, 2015 / Kristen, Gwenyth and Charlotte Gray visited longtime friends in Naperville, Illinois, before heading to Itasca to attend “Fire Up a Cure, the BDSRA Family Annual Conference, July  9-12.

Above / Kristen Gray and her two daughters, Gwenyth and Charlotte. (PN Photo)

Original Post, June 22, 2015 /On Friday, Whitney Robbins contacted PN with a request to put us in touch with Casey Breese McCormick, a childhood friend of Kristen Kaiser Gray.

I am reaching out to you to see if you can help me and few other Naperville Moms.

Recently, a woman we grew up with here in Naperville (Naperville North Alumni), Kristen Kaiser Gray, and her husband launched a national fundraising campaign to help them save the lives of their two beautiful daughters. They were both recently diagnosed with Batten disease. Here is the link to their site curebatten.org.

Please join us in helping to save the lives of these precious girls and bring awareness/find a cure for this disease. A goal of 10 million dollars needs to be raised to fund the necessary medical research. Raising awareness nationwide or even $1 donation can help so much in reaching that goal. In fact, 15% of that goal was reached in one week. We have established a FB page called “Friends For The Charlotte and Gwenyth Gray Foundation.”    

—Whitney Robbins

Soon Casey had responded with a phone call, photos and a brief account of her special friendship with Kristen and others from the NNHS Class of 1993, including how plans have escalated to unite other longtime friends and acquaintances on the mission to raise awareness for research to cure the life-limiting disease.

Making connections with longtime friends & new ones

Kristen Kaiser Gray is my “oldest and dearest friend,” the type of friend who is more like a sister.

We first met when we were both seven and swimming on the Naperville YMCA swim team. We’ve been lifelong friends ever since.

When Kristen told me in February that her previously healthy 4 ½-year-old daughter, Charlotte, had been diagnosed with Epilepsy, I worried about her; but I knew Epilepsy was something she could manage with medicine.

Every subsequent phone call from Kristen brought scarier news. What they thought was Epilepsy was not. 

Worst case scenario was the slight possibility that it was a neurodegenerative disease. When their greatest fear was found to be true and Charlotte was diagnosed with fatal Late Infantile NCL Batten Disease CLN6, devastation is the only word to describe it. 

Within a week Kristen and her husband unfortunately found out that Gwyneth Gray, their 20-month-old daughter, also was diagnosed with the same rare form of Batten disease as her older sister.

Currently, there is no cure and no treatment for Batten disease. This is a rare genetically inherited disorder, where the early symptoms include a progressive vision loss, seizures, behavioral changes, and a loss of motor skills in previously healthy children. Symptoms get progressively worse, resulting in blindness, Parkinson’s-like symptoms and dementia. 

Patients of Late Infantile Batten disease live incredibly short lives—with life expectancy from 6 years to 12 years old.

I took pictures of Charlotte the last two times I was in Los Angeles— first when she was 9 months old and then when she was two. 

Kristen and I were very fortunate to be part of a very close group of friends. And now friends of friends are all stepping up to help Kristen and her family.  

In a race against the clock, we have a goal to raise awareness and funding in order to fight to save these two little girls and every other child that will subsequently be diagnosed with this terrible disease.

We are in the planning stages of a benefit in the honor of these children.  We are so grateful for all the help and will keep you updated with information as it happens. 

For more information about Batten disease and the Gray’s story, visit curebatten.org.

—Casey McCormick

At right / Friends since Naperville North High School, Casey Breese McCormick, bottom left, Kristen Kaiser Gray, Kelli Clare Stauffer; Meg O’Hara Elliott, Heather Shultz Hughes; and on top Brooke Scigousky Wedding, are raising awareness about the rare Batten disease.

Similar to building a pyramid with strength from the bottom to the top, the longtime friends and many new friends have high hopes to fund research for a cure to fight the devastating disease that has stricken Kristen’s two young daughters.

Photos courtesy Casey McCormick

Editor’s Note:  When the date is set for a local fundraiser, we will try to spread the word. Meanwhile, no donation is too small or too large.  As Whitney Robbins suggested at the top, every dollar is a dollar closer to their $10 million dollar goal to begin the much-needed research that could support a fast-track to clinical trials.

Until last week, many of us were unfamiliar with Batten disease. Now we know.

And when you visit curebatten.org, you’ll see family and friends want to raise awareness about the need for more focus on other rare diseases, too.