Many of us are tested with health challenges – either our own or a family member’s – but two special women decided to devote time, energy, and financial resources to help others, despite their own situations. The Houston Chapter of Hadassah will recognize Nina Proler Brown and Eve Lapin this month as Women of Courage.
It’s difficult for Eve Lapin to tell her story, and her eyes reflect both a mother’s sorrow and steely determination. She has suffered the loss of a precious child, her son Oliver, and the debilitating effects of the same genetic disease on another son. However, she decided long ago after she got through the worst of her own grieving, to go into action in the hopes to spare others the same pain.
“I am keeping the memory of Oliver alive by helping others through our foundation,” Eve explains. The foundation she is speaking of is the Stop ALD Foundation, which she and her family founded.
Although her mother’s intuition knew that something was wrong with Oliver, he was misdiagnosed. Due to the rarity of adrenoleukodystrophy, a degenerative disease that is fatal unless it can be stopped in time, many doctors are not aware of how to diagnose it in the early stages.
In 2000, two of Eve and her husband, Bobby’s, sons, Oliver and Elliott, were correctly diagnosed with ALD. “Oliver was diagnosed at age 8 when he had developed symptoms, which we found out is already too late to treat,” Eve said. “He already had started losing abilities. My husband and I went into action researching and giving him immediate care.”
As soon as Oliver was diagnosed, Eve, a sister, and her mother found out that they are all genetic carriers of the disease. Eve tested all three of her sons, and only her youngest son, Alec, was in the clear.
It was too late for any type of treatment for Oliver, but Elliott and his first cousin, underwent a stem cell transplant with umbilical chord blood. Elliott, who was 6, was cured of ALD, but had a rare reaction by his central nervous system to graft-versus-host disease, which can result from transplants. Inflammation in his brain keeps him in a wheelchair these days, but he attends St. Johns School and leads a full life. Sadly, despite Eve and her husband’s loving care, Oliver deteriorated and passed away in 2004.
Eve’s mission is to spread the word about this disease through her family’s foundation. The foundation sends out medical literature to doctors, and it funds research on treatments such as a recent gene therapy trial. Three boys in Europe recently were able to receive the gene therapy thanks in part to their organization, which is run exclusively by their family members. “We have done a lot of research, and looked at all possibilities,” Eve said. “Now other parents can be active and proactive in getting the right diagnosis and treatments early, before it is too late.”
A lovely 69-year-old ball of graciousness, smiles, and energy, Nina Proler Brown is also stylish and fun. That she has a debilitating case of Parkinson’s disease hardly detracts from Nina’s magnetic personality.
She takes a vigorous routine of medications around the clock, but still has severe involuntary movement. The distraction of her movements is fleeting though, because when she speaks, focus shifts to her intelligence, determination, and zest for life.
Nina was diagnosed 24 years ago when she began losing balance, and the once shy person has become an advocate, speaker, and co-founder of two organizations to help others with Parkinson’s. Nina’s husband, Joe, works right by her side and lovingly helps to care for her. Her two grown children and four grandchildren live close by and are also involved in her causes.
Texans for the Advancement in Medical Research is the first group they founded and is an all-volunteer advocacy group for stem cell research and treatment for diseases, including Parkinson’s. Nina went to Austin to testify when there was a bill trying to legislate against it in Texas.
She also co-founded an education organization, The Alliance for Medical Research, and was instrumental in funding a DVD that explains the benefits of this type of research. Nina publishes a newsletter for the Houston Area Parkinson’s Society, a support group she helped to organize, and says, “I believe that it is only 10 percent of what is wrong with you and 90 percent how you respond. I am not just doing this for me, or my children, or grandchildren, but for everyone.”
It takes a special kind of courage to reach beyond yourself and your circumstances. In Nina and Eve’s cases, our community is so much better for it.