Waiting for Mandy Young Sigley at Ipp’s Pastaria in Woodstock, I worried: the front door is heavy; should I stand by the door, ready to help? There are two steps down to the dining room; maybe we should eat in the bar. Oh no, it might be hard for her to get onto the bar stool. Perhaps I should carry her over the steps. Definitely not!

Maybe I should pull her chair out for her. I do it for able-bodied people, but… The door to Ipp’s flies open and an exuberant blonde woman blows in and negotiates the stairs effortlessly. Before I can even stand up, she sits down and orders a tea as sweet as her megawatt white smile. Her disability is forgotten. We are simply two women sharing the ups and downs of life.

Mandy is inspirational, funny, and empathetic, but she is also down to earth. She doesn’t sugarcoat how arduous her journey has been, and she gives all the credit for her survival to her faith and her family. First we address what Mandy calls the elephant in the room: her missing leg.

Health Spiral

Born to Lisa and Speed Young in 1981 in North Carolina, Mandy was a healthy baby until she developed her first infection at nine months old. What followed was a cascade of devastating illnesses. She had spinal meningitis three times, strep throat, scarlet fever, double pneumonia, and a stroke that left one side of her body paralyzed. She fell into a coma three times and underwent seven surgical procedures, all before she reached four years old. With each critical illness her body never ran a fever or showed symptoms, allowing each condition to progress to dangerous proportions.

Mandy’s doctors were perplexed by what was going on. She was sent to Houston, Texas, to meet with the doctors of David Vetter, the “Bubble Boy” who was placed in a complex containment management system for severe combined immunodeficiency. The doctors decided that if they knew what Mandy had, they would have done the same with Mandy at birth, but by the time she reached age four, it was too late. She was diagnosed with a low white blood cell count, but other than that, Mandy’s condition was unknown to science.

The Young family had to return home and hope science caught up before their daughter died. What a terrifying thing! Mandy’s parents were told nine times to say goodbye to their daughter because doctors believed she would die.

A Cheerleader Arrives

Lisa and Speed made the decision not to have any more children. Mandy consumed all their time, their finances were complicated, and their greatest fear was that another child would have the same disease. When Lisa shared the decision with her doctor, Dr. Alexander disagreed, telling her, “You must have another child. Mandy’s sickness is so rare that it is not an issue, and [she] will probably die. Another child will help you grieve and keep you going.”

Dr. Alexander passed away six months before Lisa and Speed’s second child, Alex, was born, named after the doctor who encouraged them to have her. Alex and Mandy became a beautiful sister duo from the start. The years have only strengthened the bond the two strong women share. They are each other’s biggest fans, and Alex’s three daughters are precious to Mandy.

Life on the Edge

As Mandy grew, the time between Mandy’s sicknesses grew, and the family hoped perhaps she had outgrown her disease. Alas, their hopes were dashed when a small cut on her calf became infected and raged out of control, developing gas gangrene and septicemia, bacterial blood poisoning.

Given the bleak prognosis, Lisa and Speed consented to amputating her left leg and hip in June 1990, which would give Mandy a 3 percent chance to live. Without the surgery, doctors felt certain she would die.

During surgery her lungs collapsed, her kidneys failed, and her heart stopped. Put into a medically induced coma, she then stayed in a coma on her own until finally waking up just before her ninth birthday.

Above the Pain

Mandy says that during surgery, she had a near-death experience. She felt her soul float above the table. She recalls, “I could see all the chaos below, all the doctors and nurses scrambling to save my life, and I just didn’t care; it was fine. I felt completely calm. I saw the brightest white light, but it didn’t hurt my eyes at all. I could feel a presence all around me. It spoke, but not outside of me, like a voice inside of me, and said, ‘Go back. It isn’t your time.’”

During recovery Mandy had to learn to sit, walk, and navigate the world on crutches. She also had to live in isolation for a year after her amputation. The recovery was grueling, painful, and time-consuming.

Finally doctors referred Mandy to the National Institutes of Health [NIH] in Bethesda, Maryland, one of the world’s foremost research institutions. It was there that Mandy met Dr. John Gallin, who studied her case for thirty-three years and became a vital person in her life.

At Last, a Diagnosis

In 2004 Dr. Gallin’s research, tests, and studies resulted in Mandy being the first person in the world to be diagnosed with IRAK-4 deficiency. Since that time forty-nine others have been diagnosed with the disease.

Photo Courtesy of Mandy Young Sigley

In April 2023 Mandy and her parents, Speed and Lisa Young, traveled to Bethesda, Maryland, to celebrate the retirement of Dr. John Gallin, the physician whose research led to Mandy’s breakthrough diagnosis.
(L-R: Speed Young, Lisa Young, Dr. John Gallin, Mandy Young Sigley)

According to the National Organization for Rare Disorders, IRAK-4 deficiency is caused by mutations in the IRAK-4 gene. It affects the immune system and results in severe bacterial infections. Studies revealed a one-in-a-million chance for each of Mandy’s parents to have a mutated gene, a one-in-a-billion chance they would have the same mutated gene, and one-in-all-the-world chance that they would find each other and have children. Even then, the couple’s children have a one-in-four chance of inheriting the condition because of the genetic lottery of parents’ genes. Mandy’s doctor told her that statistically, she won the genetic lottery.

Mandy agrees with the doctor that she won the lottery because she is able to see the big picture. She says, “Out of all the people in the world, God chose me to do this for him. Scientists have never been this deep into the immune system before, and what they are learning from me, as well as discovering my disease, has helped them learn about lupus, arthritis, cancer, and heart disease. What I have been through may have helped millions. What a job, and how much God must trust me to do this for him!”

Iron Bond

Statistics don’t favor parents staying together when caring for a chronically ill child. Lisa and Speed faced their daunting challenge as a family, never letting anything split the family unit. Mandy’s disease was the family’s disease, and they battled it together. Speed worked nights and Lisa worked days, so someone was always with Mandy. The grandparents on both sides helped, and their faith family kept them going with donations, meals, and help whenever needed.

Photo Courtesy of Mandy Young Sigley

Family Feud equals family fun! Mandy and her family appeared alongside funny man Steve Harvey on the classic game show.
(L-R: Speed Young, Lisa Young, sister Alex Young Crawford, Steve Harvey, Mandy Young Sigley, and cousin Ryan Miller)

Mandy recalls, “Other families were going on vacations. My parents were pulling my sister out of school, and my dad was taking vacation days to go to the NIH in Maryland. We treated it as a family vacation.”

Mandy gives her mother, Lisa, much credit for keeping her alive, describing her as a force of nature and a mama bear that always protected her. Lisa comments, “I prayed without ceasing. I trusted my intuition. I wasn’t afraid to respectfully challenge a diagnosis or reason for a procedure or keep calling for test results from doctors. Never lose hope. God can change your situation. Have Faith; God is still in the miracle-making business.”

Over the years Mandy’s health crises have grown infrequent and subdued, and she has built a beautiful life. Now a wish maker for the Make-A-Wish Foundation, she meets with Make-A-Wish Foundation recipients, hears their wishes, and then throws a party for them, telling them how their wish will happen.

Another important part of Mandy’s life is public speaking. Initially she fought the call to speak, but then, she says, “The Lord spoke to me and said, ‘I have let you live through things no one else has lived through. I have given you a personality where you would talk to a rock and a mouth that won’t shut up. Why won’t you speak for me?’” Mandy, who has endured more than a hundred hospital visits so far, surrendered to sharing her inspiring story. Her message is simple: “A positive attitude and faith in God can get you through even your worst days.” She insists, “The things you are going through develop you into who God made you to be.”

Lemonade Life

Into her thirties, Mandy felt quite complete in her singleness and didn’t see it changing. She had dated but never felt the connection she was looking for, until fate stepped in. Lemons have been a recurring theme in Mandy’s life, as she had always wanted to name her ministry Lemonade Life but had been talked out of it. It’s only fitting that a discussion about a glass of sweet tea full of lemons sparked a conversation that hasn’t stopped.

Mandy first met William Sigley through Instagram when he complimented her beautiful smile. She brushed it off as a simple flirtation, but a year later their courtship began. Mandy tears up when she says, “William is everything I prayed for and things I didn’t even know I needed.” William has four children, and Mandy feels blessed to be their bonus mom. Mandy and William’s wedding had a lemon theme, filled with shades of pink and yellow, lemons in glass vases, and—to symbolize the unity of the new families—dirt from both parents’ homes mixed in a pot into which Mandy and William planted a lemon tree that now resides at their house.

Photo Credit: Raymond Werner/Enjoy Cherokee Magazine

William and Mandy share a toast inside Prime 120 in downtown Woodstock.

Tasty Connection

William is a chef and with his business partner Jason Sheetz is part owner of a restaurant group called Succulent Hospitality, which includes Prime 120 in Downtown Woodstock and Under the Cork Tree in the Prado shopping center in Sandy Springs. The duo’s next ventures include three new restaurants coming to Downtown Woodstock’s Adair Park: Roberto’s, an open-kitchen concept authentic oyster bar; Oishii, a sushi noodle bar; and Kung Fu Bar, inspired by the cuisine of Tokyo.

Roberto’s Oyster Bar is named after William Sigley and Jason Sheetz’s longest employee, Roberto, a gregarious, diligent, dependable employee with a massive smile and who was always whistling a tune. He was also the fastest oyster shucker around. Roberto passed away in 2020, a victim of Covid-19. The restaurant is a homage to a dear friend with a heart of gold gone too soon. The restaurant will serve only the best oysters and shellfish from around the world.

Meeting William at Prime 120 in Woodstock is different from talking with Mandy. It is like seeing the other half of a whole. Where Mandy is a bright Broadway light, William, with his striking blue eyes, is a warm, cozy candle that illuminates the room. When asked about how Mandy has made his life better, his answer is, “In every conceivable way. Being with her has made me more compassionate, more outgoing, more loving, nicer. We are so compatible. This is what I was looking for. We are constantly together, and we both love it.”

Mandy steps in and they debate who has made whom more compassionate. The couple is adorable.

Talking about his wife’s work with the Make-A-Wish program, William beams with pride. “Mandy is amazing with the kids. [At the] last minute the wish granters asked her to take five kids, and she did a great job,” he shares.

Photo Courtesy of Mandy Young Sigley

Mandy Young Sigley also works as a travel agent specializing in Disney Parks and Cruises. She is also available to provide travel support and services to special needs individuals and their families.

Inner Peace

Mandy reminds us, “We are created to do hard things. I know my purpose, and that brings such peace. Not everyone can say that.”

Mandy’s current health is good, but she must remain vigilant for any changes and act quickly. While her case is still being studied at NIH, she faces future surgeries and lives with chronic pain. She leans on her beloved mother’s mantra, “You get ten minutes to cry and scream, then we get ready for battle.”

Mandy has a favorite tank top emblazoned with “Leg Story: $10.” Now that you’ve saved the ten dollars, donate it to Make-A-Wish at Wish.org.

 

 

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