Diana Phillips spent her life fighting an illness that claimed both her sons

Diana Phillips experienced a tragedy for 75 years, but her life was not a tragedy.

Laughter and learning from the second grade taught at White Bluff Elementary School, the loyalty and dedication of many friends, thought-provoking Bible studies, Sunday school lessons at the Isle of Hope United Methodist Church, full of delicious scents and flavors. .. Great memories shared with her finished kitchen, her son Chris, his wife Lucille, and their two daughters Jolly (12) and Mia (11).

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“Diana is a very special person,” says her daughter-in-law, Lucille Phillips. She said, “There are many lessons to be learned based on her life. She has a beautiful soul. Thanks to her, I feel much fortunate and more fortunate.”

Clayton, seated, Diana Phillips with Chris.

Clayton, seated, Diana Phillips with Chris.

This is despite the fact that both Diana’s sons died of adrenoleukodystrophy (ALD) 38 years apart. The illness that brought her son usually appears in childhood, progresses rapidly, and causes brain deterioration. Her youngest child, Clayton, died in 1980 at the age of six after being ill for two years. Her eldest son, Chris, was a milder illness and did not begin to experience symptoms until his late twenties, when his mobility was affected. He died on July 5, 2018 at the age of 47.

Diana suffered from the adult version of Adrenomyeloneuropthy (AMN). It develops later in life and mainly affects the spinal cord.

She had been hospice-care for several weeks before she died on Saturday.

Genetic status

ALD is a rare hereditary disease that occurs in 1 in 20,000 births and is most common in men. It affects the nervous system and adrenal glands. It is incurable and there is no cure. The disease prevents cells in the brain from signaling the brain and other parts of the body. It causes weakness and stiffness in the lower limbs and worsens over time.

Some people also experience speech or sexual problems, bladder control problems, nausea and weight loss. If the illness is related to the brain, behavioral changes, thought changes, vision or deafness, and seizures can occur.

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The condition was the focus of the 1992 movie “Lorenzo’s Oil”, based on the true story of a boy named Lorenzo Odne and his parents fought to save their son. Their tenacity led to the development of Lorenzo’s oil, a combination of erucic acid and oleic acid. It is still used as an experimental treatment to slow the progression of the disease. Lorenzo Odone died of pneumonia at the age of 30 in May 2008, 20 years later than the doctor predicted.

Susan Sarandon, Nick Nolte, Zack O & # 39; Marie Greenberg, 1992 Movie, & # 39; Lorenzo Oil & # 39;

Susan Sarandon, Nick Nolte, Zack O’Malley Greenberg, 1992 movie “Lorenzo’s Oil”.

When she grew up in the middle of three sisters in Marietta, Georgia, the illness was not on Diana Dubry’s radar. She graduated from Marietta High School and earned her primary education degree from Mercer University in Macon. There she met AB from Mercer in 1968 and Bobby Phillips from the handsome and friendly Savannah who received her PhD in law in 1970.

After graduating, Bobby joined the US Army, where the couple moved to Staggert, Germany, where Bobby worked for the Army’s Legal Department, Judge Advocate General Corporation (JAGC) for four years. While in Germany, Diana and Bobby had two sons, Chris in 1971 and Clayton in 1974.

In 1974, the family returned to Savannah, where Bobby practiced legal affairs and Diana raised a boy. When Clayton was four years old, his kindergarten teacher contacted his parents and used one of his arms to guide the other arm to the crayon box, so Clayton had vision problems. He said he believed there was. They took him to a vision test and were told that the problem was not his vision, but a neurological problem.

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It began to explore what went wrong, and the dreaded diagnosis of ALD. Things got worse rapidly, despite efforts to pursue possible treatments, including consultations with Dr. Hugo Moser at The Johns Hopkins Hospital in Baltimore. His collaboration with ALD was featured in “Lorenzo’s Oil”.

Clayton died on December 22, 1980 at the age of six.

“It’s a tragic part of the illness,” explained Diana’s longtime church friend Sally Scott. “Doctors are really just checking for decline. There is nothing they can do.”

Dedicated to education

Despite Clayton’s diagnosis, Bobby ran for Georgia State Representatives, won a seat, and served from 1979 to 1984. Clayton died shortly after his inauguration. The loss hit Bobby and Diana’s marriage and divorced in May 1985. Shortly thereafter, Diana was diagnosed with breast cancer.

But what about Diana Phillips is that, despite these great traumas, she maintained a positive attitude about life and a steady faith that surprised her friends. They used adjectives such as “courageous,” “decided,” “fiercely independent,” and “faithful.”

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“Her focus has always been on what she can do for someone else,” says Scott. “I’ve never heard her talk negatively about Bobby. In fact, when he remarried and had a child, Dianna babysat so they could go out. She said the baby was Chris. She was a half-parent and said she didn’t want to make him feel welcome in her house. That’s a kind of grace she has. Both stopped the train on each other. I know it will end. “

After the divorce, Diana began teaching in public school. She met her third-year teacher, Jane Anderson, first in Juliette Gordon and then in White Bluff. They taught all day, attended night classes at Armstrong State University, and both earned a master’s degree. On many Friday nights, they stopped by for dinner on their way home.

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“Diana was a great teacher, but she was still talking about the students. I learned a lot from being around her. The main thing was to be kind. She was always very kind. And strong. She had a very deep faith. She was good at cooking. “

“During my birthday, she told me to invite four people and cooked dinner for six of us. Crabs, shrimp, potatoes, green beans and desserts. Everything was delicious. Her lemon bar was very tasty. She will bring it when we are asked to bring a covered dish. “

Second trip

Meanwhile, Diana’s surviving son, Chris, was prosperous. He had a happy and healthy childhood and was eating with his neighbor Daniel Sims. He attended Hancock Day School and Hess Elementary School until sixth grade and graduated from Savannah Country Day in 1989. He earned his bachelor’s degree from Northwestern University, earned a CPA accreditation, and practiced accounting.

He returned to school to study law at the University of Georgia and entered the bar in 2002.

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In his late twenties, he began to experience mobility problems. As his gait worsened, he chose a wheelchair to move more efficiently. Still, he lived a fulfilling life, including serving as a staff lawyer for bankruptcy judge Lamar Davis in the Savannah before joining a law firm in Atlanta, which specializes in bankruptcy law. In Atlanta, he participated in wheelchair sports such as tennis and marathons. He loves traveling and went to Europe alone after graduating from his college, where he met his friends. There they survived for months with cheese, crackers, and the kindness of strangers and saw the world.

Chris Phillips and his wife Lucille.

Chris Phillips and his wife Lucille.

In 2007, Chris met Lucil Truong from Vietnam and proposed a trip to St. John in the Virgin Islands. They got married in 2008, after which Jolly and Mia pleased Diana. Her favorite job was Mimi.

“We had two beautiful children and we had a normal relationship,” explains Lucil. “It’s short, but we lived every day with a purpose.”

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The time spent with Diana was especially valuable to the girl. “She always invited her friends to eat her lovely supper. The moment she spent with her in the kitchen, especially her Thanksgiving, is most impressive,” says Lucille. “She drove her special car to come see us. She did everything she could to be self-reliant. She didn’t want to be at the mercy of anyone.”

In 2017, Chris’s health began to deteriorate significantly, and his mother wanted to send him home to take care of Chris.

“Diana has the will of iron,” explains Scott. “She felt that no one could take care of Chris, so after he celebrated Christmas with his family in 2017, she took him home and he Died on July 5, 2018. “

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“When Chris was ill, the care she gave him was great,” Lucille added. “It was a tragedy at the time. It’s a tragedy to bury a child before you. But Diana helped me understand that death is just a transition to a new beginning. She raised a wonderful son, and I am very fortunate to know him and to know her. “

Her own trial

Diana began experiencing her symptoms while teaching sophomore at White Bluff School, which had been in the classroom for 20 years. “She taught in a wheelchair for two years. She says until she realizes the fact that it’s difficult to teach elementary school from a wheelchair.”

When Diana retired, she continued to use her educational skills and volunteered during the COVID-19 pandemic at a special remote school established at the Isle of Hope Elementary School and the Isle of Hope United Methodist Church.

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She also volunteered daily as a literacy / GED tutor at the St. Mary’s Center and was so loyal to her job that they offered to give her a part-time salary. She drove a specially equipped car and refused to get in and out of the car or offer wheelchair assistance. Once, when her family couldn’t go together on vacation, she drove anyway and visited the museum she always wanted to see.

Diana Phillips in the kitchen with her granddaughter Jolly (printtop) and Mia.

Diana Phillips in the kitchen with her granddaughter Jolly (printtop) and Mia.

“She lived a very lively life. Nothing slowed her down. She was fiercely independent. She started a workout with a personal trainer three years ago.” I have to keep what I have, “she told me,” Scott explains.

When the White Bluff staff filled out a questionnaire in 2003 to let them know, Diana was asked if there was anything in your life that you were very proud of (events, people, etc.). rice field. She wrote “yes”. If so, what / who? “My son, Chris,” she wrote. The answer to the question “Are there any secret ambitions?” “Becoming a world traveler.”

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Finally, Diana’s wish to her friends was to be with the boys again.

“She will be happy with her boys again, and they will all be standing together,” says Scott.

“It’s a pretty picture.”

This article was originally published in Savannah Morning News: After losing his son to the same illness, his mother died of a genetic disorder