In the soot-stained industrial air of 1951 Birmingham, Mary Jones was a woman who knew the meaning of hard work and harder choices. An Irish immigrant from County Leitrim, she had spent the war years as a drilling machinist at the Austin Works car factory, a job that required a steady hand and an unbreakable spirit. But by the time her daughter Sheila was a toddler, Mary was facing a different kind of grind. Her marriage to Edgar James Jones had collapsed, leaving her a single mother in a cramped ground-floor flat on Matlock Road in Tyseley. To keep food on the table for her two sons and her baby girl, she took in two lodgers, living a life of quiet, wearying grit.
Yet, it was her daughter’s health that truly tested her. Sheila, born in October 1949, wasn't hitting the milestones her brothers had. She didn't sit up until she was nine months old; she didn't stand, and she didn't speak. Instead, she spent her days in a state of constant, rhythmic distress—crying, groaning, and banging her head against her pillow. Then there was the smell: a strange, "mouse-like" odor that clung to her skin.
When Mary finally secured a referral to Birmingham Children’s Hospital, Sheila was seen by Dr. John Gerrard. It was April 14, 1951—Gerrard’s birthday—when a simple ferric chloride test turned the urine sample an unmistakable olive green. It was a diagnosis of Phenylketonuria (PKU), only the third ever made at the clinic. At the time, the medical consensus was a death sentence for a child’s mind. PKU meant an incurable build-up of phenylalanine that poisoned the brain. The only "treatment" the era offered was a bleak future in an asylum.
Beyond "Fancy Investigations": The Power of Persistence
The doctors were excited by the rare diagnosis, but Mary was in despair. She didn't care for the "fancy investigations" or the scientific rarity of her daughter’s condition; she wanted a way to save her child. While the institution saw an untreatable metabolic error, Mary saw a daughter who was slipping away.
She began a relentless vigil. Every morning, she waited outside the laboratory door of Dr. Horst Bickel, a German PhD student who was working alongside Dr. Evelyn Hickmans. Hickmans was a pioneer in her own right—the hospital’s first biochemist and only the second woman in the UK to hold such a post. Mary’s refusal to accept a "no therapy" verdict became the friction that sparked the scientific fire. Dr. Bickel later recorded this maternal pressure in his PhD thesis:
"She waited for me every morning before the laboratory door, making quite clear it was treatment what she wanted for her child, not fancy investigations. She did not accept that so far there was no therapy for this condition. The mother’s perseverance gave me no chance to rest on the strength of a fine diagnosis."
The Laboratory Cure: Charcoal, Columns, and "Disgusting" Diets
Driven by Mary’s tenacity, the team—Bickel, Hickmans, and Gerrard—decided to attempt the impossible: a diet that removed phenylalanine from protein. They used casein hydrolysate provided by the company Allen and Hanburys and began a grueling purification process. They used a three-foot glass column filled with activated charcoal to filter the protein substitute.
The work was primitive and punishing. Working in a freezing laboratory through the Christmas of 1951, Bickel and Hickmans frequently became "black as coal" from handling the charcoal. The resulting liquid was stored in heavy, dark glass "Winchester bottles"—the kind typically used for strong acids. This was the world’s first PKU treatment, and today, that original glass column remains on display in a cabinet in the hospital’s biochemistry department as a testament to their collaborative desperation.
A "Disgusting" Mixture Sheila’s brothers, Terry and Trevor, remember the arrival of those bottles with a shudder. They described the mixture as "disgusting," looking and smelling "like tar." It was a foul, unpalatable substance that Mary had to struggle to get Sheila to drink twice a day. Because she had no car, Mary had to carry those heavy Winchester bottles home on the bus every single week, balancing her responsibilities as a single mother with the physical weight of her daughter's only hope. Sheila finally began the trial in September 1951, nearly two years old—a late start, but a start nonetheless.
The Tears That Proved the Science: The Secret Challenge
By October 1952, the results were undeniable. Sheila had stopped banging her head. Her hair, once fair and brittle, had darkened. She was crawling, climbing, and beginning to stand. However, the medical world required absolute proof that the diet—and not just the extra attention—was responsible for her progress.
The doctors initiated a "Phenylalanine Challenge." Without telling Mary, they added 4 to 5 grams of phenylalanine back into Sheila’s mixture. The regression was instant and heartbreaking. Soon, Sheila was "lifeless." Mary returned to the hospital in tears, reporting that her daughter had returned to her irritable, vacant state.
This "uncontrolled trial of one" would be an ethical nightmare today, but in 1952, those tears were the critical evidence needed to justify the diet's continuation. Mary eventually gave permission for a second challenge to be conducted in the hospital so it could be filmed. In that footage, the world saw the truth: when the toxin was removed, Sheila reached out. When it was added, she withdrew into a fog. This heartbreak was the catalyst for the commercial production of the diet, moving the breakthrough from a single Birmingham lab to the rest of the world.
A Legacy in Every Heel Prick: From Birmingham to the World
Sheila’s progress proved that dietary modification could work, a discovery that led directly to the development of the "heel prick" test, the universal newborn screening that saves thousands of children today. But for Sheila and Mary, the victory was bittersweet.
In 1956, the family moved to the "back-to-back" houses of Aston. These were Victorian terraces where thirty houses shared a single inner courtyard and communal toilets. Living in such deep poverty with four sons and no family support, Mary reached the end of her strength. By 1958, exhausted and facing a nervous breakdown, she could no longer maintain the difficult diet or manage Sheila’s care.
Sheila was admitted to Chelmsley Hospital (and later Brooklands), an asylum for those with severe learning disabilities. Because the diet had started so late, Sheila’s mental age remained around two years; she never gained the power of speech. Mary never stopped being her mother, though—she visited Sheila faithfully every month until her own death in 1981. It wasn't until 1987 that Professor Anne Green "rediscovered" Sheila in the hospital records, realizing the woman in the ward was the same little girl who had changed medical history.
The Sheila Jones Award: Why Advocacy Has a Name
Today, the European Society for Phenylketonuria (ESPKU) honors this legacy with the Sheila Jones Award. Most medical awards recognize the scientists in the white coats, but this one is for the patient advocates—the parents and volunteers who, like Mary, refuse to take "no" for an answer.
The award is symbolized by a set of keys. This refers to the 1952 film of Sheila’s treatment. In the footage taken before the diet, Sheila is "lifeless," ignoring Dr. Bickel’s keys when he jingles them. But in the footage taken after the treatment, she reaches out, her small hand grasping for the keys to play with them. That transition from withdrawal to engagement—from a closed world to an open one—is the soul of the award. It represents the "keys to the future" that Mary’s persistence unlocked for every child born with PKU today.
The Door That Remains Open
Sheila Jones passed away in 1999 at the age of 49. While the diet came too late to fully "save" her mental development, her life was the foundation upon which modern metabolic medicine was built. Because one mother from County Leitrim stood at a laboratory door in 1951 and demanded better for her child, millions of children now grow up to lead healthy, normal lives.
Sheila’s legacy lives on in every healthy child diagnosed at birth. Her story serves as a reminder that science often needs a push from the heart. It leaves us with a final, stirring thought: If one mother’s refusal to accept the "untreatable" could change the world of medicine forever, what other conditions are simply waiting for someone with enough grit to keep knocking until the door opens?
