Healthy Living

27-Year-Old Learning to Love Life After Harrowing Illness

Within two hours of stem cell therapy, Sarah began to notice changes in her body. She felt a small burst of energy that prompted her to sit up, talk, and start walking with the help of a mobility aid.

For 23 years now, Sarah Hughes has been battling a debilitating autoimmune disease known as systemic idiopathic juvenile arthritis (SIJA). SIJA affects multiple organs and systems in the body. It can occur at any time throughout childhood, although it generally starts before the age of 5. In almost every case, recurring fever and rash are the first signs of the disease, followed by arthritis.

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As a child, Sarah put on a brave smile but lived in constant pain since she was a baby. She was diagnosed with SIJA at the age of 11 months. Her aunt and her mother’s twin, Sarah Jane, passed away at the age of 37 after her own battle with juvenile arthritis. It was just days before Sarah’s 7th birthday, a day which she would shed away from. It was also a reminder of the outcome of her condition – a death sentence. However, Sarah and her mother, Fiona, were committed to tackling the disease.

In and out of the hospital

A couple of months after Sarah was born, little pockets filled with fluid began to appear around her joints. She also suffered from fevers that reached up to 107 degrees. When Sarah learned how to crawl, she awkwardly tried to avoid using her painful and swollen joints.

After undergoing a series of tests and blood work, Sarah tested positive for autoimmune disease and she was put on low-dose medications. She was fitted with little braces so that her joints were not deformed. During this time, Fiona focused on trying to keep her daughter’s life as normal as possible by sharing with Sarah her own passion for horses.

At the age of 4, Sarah began to experience severe migraine headaches. In a panicked state, Fiona rushed her daughter to the hospital, where doctors discovered that Sarah had arthritis in vertebrae just beneath the base of her skull. “It was the first time I was told that her life was in jeopardy,” said Fiona.

The arthritis was rapidly growing and spreading throughout Sarah’s spinal cord, affecting her heart and lungs. In order to protect her vertebrae, she was put on TNF blockers to suppress the inflammatory response. However, soon enough, the rest of her body was under attack. Her digestive system failed and she developed antibodies that turned against her immune system. And her symptoms only worsened as she grew older.

When she entered elementary school, Sarah had to walk around on crutches. She also underwent aggressive treatments and took medications that caused her hair to fall out. She could not eat and had to be tube-fed through an IV, which made her very ill. Sarah was also a victim of bullying due to her condition and it was not long before she became “homebound”. Her teachers would visit her at home or drop off assignments for her to complete.

Ravaged by an unbearable disease

Doctors talked with Fiona about how to care for her daughter and how to keep her comfortable for the rest of her life – however long or short it may be. “I called the specialists together and said ‘I know you can’t fix her, but I’m mad at you for giving up on her’” she said. But Fiona did not give up and soon enough, Sarah’s doctors arranged to have her assessed at the National Institutes of Health in Maryland. It was there that she underwent extensive testing and since her juvenile arthritis was so rare, doctors there referred to it as ‘Sarah’s disease’. Although there was not much that they could do for her, Sarah knew that the doctors could learn a lot more about the disease from her. Hopefully, it would help to treat others down the line.

By the time Sarah reached high school age, she looked much like an ill cancer patient. She had bald patches on her head, dropped to 83 pounds, and had dark circles under her eyes. Her care team predicted that she would pass away in her early 20s. And as her body wasted away, she spent most of her time in bed, with no energy and in constant pain.

The disease caused her to graduate from high school three years late, but she was determined to walk across the stage to receive her diploma. Her fellow students stood in front and behind her, guiding her as she moved across the stage.

A remarkable recovery of hope and survival

When she was 22 years old, Sarah learned about stem cell therapy, a medical advance that uses stem cells to treat or prevent a disease. Seeing as how none of her other treatments were working, Sarah and her mother began to learn more about this type of treatment offered by Dr. Stanley Jones, co-founder of Houston-based Celtex Therapeutics. However, to receive the procedure without any delay, it would involve making a trip down to Mexico.

Shortly after her 23rd birthday, Sarah decided to pursue the therapy that has changed the lives of hundreds of others, hopeful that it would do the same for her. “I realized at the time that the life I have is not living, it’s not a life at all. I just want to try. I had watched my aunt die from this and saw what could happen. I always knew that could happen to me, I just didn’t know when” she said.

Within two hours of an infusion, Sarah began to notice changes in her body. She felt a small burst of energy that prompted her to sit up, talk, and start walking with the help of a mobility aid. A more surprising sensation was that she was hungry and eager to eat. Just two months after the therapy, Sarah’s digestive system began to stabilize and she began to eat food without the use of an IV tube. Her hives and infections had disappeared, her joints were no longer inflamed, and her spinal leakage had stopped.

A year after the therapy, Sarah stopped undergoing rounds of chemotherapy and she stopped taking a majority of her maintenance drugs. To date, she has received 22 infusions of stem cell therapy. “If not for the help of high-dose autologous mesenchymal stem cell therapy, I would not be here today,” she said.

New hope for the future

Nowadays, Sarah is living a healthy life and she is happily married. She enjoys riding her horse, swimming, socially interacting with others, and much more. She is making up for all of the experiences that she missed out on. “I have hope now, and I didn’t have that before. My life is 100% different” she said.

For Fiona, seeing her daughter in a new bright light and seizing life’s opportunities is something that she had always wished for. “I’ve lived my life with a lump in my throat, fighting back tears with a brave face for so long. I’m so relieved to be me now. She’s her, and I’m me. We’re enjoying life together, the way it should be” she said.

Sarah is now sharing her story with the public and advocating for life-saving therapies. “My experience has taught me the power of hope, and my greatest hope is that we come together as a nation to build a new path to make stem cell therapy a reality for Americans who are suffering and have no quality of life,” she said.

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