Top Hollywood producer battles rare disease that hits close to home

Imagine learning both your beloved daughters will likely not live beyond 12 — due to an incurable, rare neurodegenerative genetic disorder that was initially misdiagnosed. That’s the extremely difficult challenge that faces top Hollywood producer Gordon Gray and his wife, Naperville native Kristen.

The couple shared their seemingly insurmountable struggle a few days ago at the East Lake Shore home of prominent Chicagoans Shelley and Bill Farley. Shelley’s son, actor Hayes MacArthur, met Gordon Gray when he co-starred in the Gray-produced 2007 film “The Game Plan.”

For MacArthur, the cruel irony of the girls’ devastating diagnosis “is that Gordon has produced such incredibly uplifting and inspirational films over the years.” That roster includes such movies as “The Rookie,” “Miracle,” “Invincible,” “Secretariat,” “Million Dollar Arm” and “McFarland USA.” As MacArthur put it, “Now Gordon and Kristen have applied that same dedication to positive energy and purpose to finding a cure.”

The Grays addressed about 50 Chicago-area friends to introduce them to the Charlotte & Gwenyth Gray Foundation, established in their daughters’ names to raise funds to combat Batten Disease. Charlotte is now age 6 1/2, her younger sister Gwenyth is age 4. Thanks to their parents’ aggressive campaign to find a cure, an experimental clinical trial gene therapy treatment has seemingly stemmed the disease’s progress for the two girls. However, Batten Disease — which strikes one in every 250,000 births — historically leads to blindness, immobility, cognitive impairment and ultimately death between the ages of 6 and 12.

In an interview, the Grays explained how it took several frustrating months for Charlotte, and then Gywneth, to be properly diagnosed. After realizing there was something “just not right” with their previously well-developing 3-year-old daughter Charlotte, “we first made appointments with speech therapists, then occupational therapists and ultimately a neurologist,” said Kristen Gray, who explained that doctor diagnosed their daughter “as being mildly autistic, which we just knew wasn’t correct.”

Finally, a very specific blood test led to the proper diagnosis of Batten Disease and the beginning of the Grays’ determined campaign “to not simply accept what we were being told: ‘This is incurable and fatal, and there’s nothing you can do,’ ” said Gordon Gray.

Instead they have launched the foundation and dedicated their lives to raising millions of dollars that hopefully will lead to finding that elusive cure.

Among those on hand to hear the Grays’ story and learn about Batten Disease were MacArthur and his actress wife, Ali Larter; Mary Galvin; Bruce MacArthur; Shirley Michels; Candace Jordan; Lawrie and Edward Weed; Shauna and Barry Montgomery; Alexi and Jo Giannoulias; David Walsh; Doug Goodwillie; Marty and Jack Higgins; Jane and Findlay Brown; Maria Smithburg; Anne and Danny Wirtz, and Todd Buffington.

On a much lighter note, Hayes MacArthur, who has been starring on the “Angie Tribeca” TV police comedy and soon will be seen in “Super Troopers 2,” explained he will be filming a movie with Martin Freeman this summer on the East Coast, while his wife will be starring in an Olympic rowing tale, currently titled “All Together,” along with Edward Burns. “It will be nice that we both will be working relatively close to one another,” said Larter. “As you know, in Hollywood, that doesn’t happen very often!”