The most painful thing for parents is for their children to be taken away from them. However, such tragedy becomes even more heartbreaking when these parents are unable to find any way to save their own children from suffering and death. While these circumstances could take the fight out of any mother or father, Hollywood producer Gordon Gray and wife Kristen chose to stay strong and relentlessly look for a solution to the rare condition of their beloved daughters.
According to Deadline, Gray's daughters, 4-year-old daughter Charlotte and 20-month-old daughter Gwenyth, are both diagnosed with a potentially fatal neurological illness, called Batten Disease, in March. Following the diagnosis, the shocked parents were told that the rarity of the disease resulted in minimal research conducted to shed light on possible solutions since it was first discovered in 1903. Phoning in medical experts all over the globe, Gray and his wife were repeatedly told that the cure for Batten Disease has not be found to date, and even if it does surface, it will take at least two to three years before it becomes ready for humans.
"Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood," states the National Institute of Neurological Disorders and Strokes (NINDS). This illness shows its early symptoms when the patient is between the ages of 5 and 10 years, "when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures."
Some signs associated with Batten disease may not be as apparent as others, "taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling." NINDS further explains, "Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties."
Meanwhile, other doctors simply advised the couple to prepare for the onset of the more serious symptoms of the disease. "One of the doctors we spoke with said, 'I would recommend that you live in a single-story house and prepare for wheelchairs and blindness,' " shares Gray, according to People. He adds, "Most of what we heard is, 'We're years away and it's probably not going to be able to help your daughters.'"
Determined to fight back and eventually find the cure, both Gray and his wife set up an organization geared towards the search for the solution. Along with Hollywood celebrities, the couple created the Charlotte + Gwenyth Gray Foundation "to raise the estimated 10 million dollars necessary to fund the urgent medical research to save the lives of all children devastated by this disease."
Celebrities who took on the cause and urged their own fans and followers to support the organization include Channing Tatum, Jessica Biel, Gwyneth Paltrow and Jessica Alba. Former WWE superstar Dwayne "The Rock" Johnson also pitched in to help as well as Jeremy Renner and Jennifer Garner.
© 2021 ParentHerald.com All rights reserved. Do not reproduce without permission.