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Murray’s Story: From Type 1 Diabetes at Age Five to Producing Insulin Again

December 17, 2024

A Special Story from Our Impact Mailing

This year, we’re sharing our Impact Mailing campaign online for the first time. It features Murray’s story and showcases the milestones ADF has reached, thanks to your generous support.

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It was the custom of our elementary school to have an initiation party for the next sibling registered for school in the fall. My brother, Murray, was enrolled for grade 1 and was invited to the welcome party to play games, meet their new friends, and have hot dogs, cake and ice cream.

I remember looking out the living room window in anticipation for Murray returning from school. When I saw him come around the corner entering our crescent, I began to laugh because I thought he was being silly — falling, getting up, trying to run, then falling again.

My mom saw what was going on and rushed to bring him home. He didn’t want to play or talk about school, he just wanted to sleep. When dad arrived home from work, he checked on Murray.

There was no response. He couldn’t wake him up. There was a lot of turmoil and I sensed something was wrong. My dad was on the phone with our neighbour, Dr. Wong and soon my brother was whisked away to the hospital.

Diabetes: Type 1 The Signs and Symptoms

Diabetes is caused by an autoimmune disease or virus that attacks our insulin producing cells (Islet cells) in our pancreas. When this happens you no longer produce insulin. Insulin is a hormone the pancreas produces to regulate the amount of sugar in our blood by moving it into the cells. Your cells require glucose (sugar) as energy for your body to function.

There it was. My brother, Murray, had diabetes; ketoacidosis (DKA).

He required hospitalization, insulin IV infusions and chem strips (to determine his blood sugar levels). Once his blood sugars were stabilized; daily Insulin and sliding scale adjustments were going to be his new normal.

But, I just understand all of this now as I am a practicing RN, caring for numerous Insulin dependent diabetes mellitus (IDDM) patients.

Once he returned home, he endured numerous finger pokes for a tiny drop of blood to be measured with a test strip /glucometer followed by a dose of injected insulin at breakfast, lunch, supper and bedtime.

Diet and exercise played a key role in how much insulin he would require throughout the day. As resilient as children are, my brother quickly adjusted to the fine needle injections before each meal and at bedtime.

Diabetes: From Acceptance in Childhood to Challenges in the Adolescent

At 13 years old, Murray was eager to take charge of managing his own blood sugar, diet, and insulin dosages. He craved the independence of choosing from all food groups, especially snacks. His mother supervised and praised his good choices while reminding him to consider playtime or school activities.

Sometimes, his blood sugar levels were low before the next meal, especially if he was playing hard with his friends, forgetting, or perhaps ignoring his responsibilities.

Positive reinforcement and guidance were key to promoting a sense of accomplishment and responsibility. Teenagers need to be mindful when managing their diabetes, considering:

Rapid growth spurts
Increased appetites
Muscle growth (increased appetite)
Weight gain or loss
Peer pressure
Good food choices

I remember Murray experiencing frequent drops in blood sugar levels despite close monitoring, which we attributed to a learning curve and growth spurts. My older siblings were great advocates, helping him manage his diabetes by recognizing the signs and symptoms of both hypoglycemia and hyperglycemia.

New skills or changes in lifestyle require adjustments, time and practice to become proficient. Part of being a teenager is learning to be independent and developing autonomy. Murray often became frustrated and complained about the inconvenience of checking his blood sugar when out with friends. He avoided high school sports for fear of hypoglycemic reactions. He never carried a Diabetic ID card, nor would he wear the often-suggested diabetic alert bracelet.

The Secret - That Brought Unwanted Attention

Fitting in becomes crucial to teenagers; insecurities and peer pressure often lead to poor choices. When Murray entered grade 10 in High School , he decided he didn’t want anyone to know he was diabetic. It made him feel embarrassed and different. Unfortunately, while sitting in class one afternoon, he felt some symptoms of hypoglycemia coming on. Knowing he didn’t have much time, he reached into his desk for a sugary snack but there was none.

Frantically he ran from his class towards a vending machine or his locker, whichever came first. He didn’t make it. Staggering and banging up against lockers, Murray collapsed to the floor. He was incoherent with slurred speech as he tried to respond to a teacher. Suddenly he slipped into a severe hypoglycemic reaction causing seizure-like activity and unresponsiveness.

The commotion drew the attention of students and teachers along with accusations of alcohol or drug use the police and ambulance were called. The office notified my dad to tell him his son appeared to be under the influence of drugs and would be expelled from school.

The matter was soon resolved when my dad informed the Principal about Murray’s diabetes. Upon returning to school the next day he realized his friends were quite concerned for his well being. No one treated him any differently and he began to carry a card in his wallet stating his medical condition.

He was also granted permission to eat in class whenever necessary.

The take-aways are:

Always check your blood sugars when you’re unsure.
Always keep sweet snacks within reach.
Let your teachers and friends know you are a diabetic and wear a diabetic bracelet.

What Are the Consequences of High Blood Sugars?

Murray had always believed that keeping his blood sugars within a normal range would prevent any sudden drops. However, despite his best efforts, there were times when his blood sugars would plummet unexpectedly. To avoid these unpredictable episodes, he decided to keep his sugar levels slightly elevated, thinking this would eliminate the need for constant monitoring.

Chronic elevation can damage blood vessels, increase cholesterol levels, and interfere with wound healing. This can lead to severe complications such as lower limb amputations, retinopathy, strokes, and heart problems. High blood pressure, which often accompanies elevated blood sugars, can also impair kidney function.

Unfortunately, my brother experienced these severe consequences firsthand. By his 50s, his kidneys began to fail, and he was placed on the transplant list. Eventually, doctors suggested that an islet cell transplant might be a viable option.

Introducing Dr. James Shapiro

Dr. James Shapiro is Professor of Surgery, Medicine and Surgical Oncology at the University of Alberta. He is also the Director of the Clinical Islet Transplant Program and the Living Donor Liver Transplant Program with AHS.

Dr. Shapiro is world-renowned for leading a team of expert physicians and researchers in developing "The Edmonton Protocol of Islet Cell Transplants" at the University of Alberta Hospital. Dr. Shapiro and his research team are actively working towards a cure for diabetes. Their efforts include:

Performing islet cell transplants from donors into the livers of recipients
Running clinical trials and conducting further research to prevent or halt the immune attack on islet cells in newly diagnosed Type 1 diabetes patients
Using patients' stem cells to generate more islet cells, thereby eliminating the need for immunosuppression
Conducting additional research trials to modify gene codes

October 2015

Murray willingly participated in all pretesting and clinical visits to determine his eligibility for the Islet cell transplant. For instance, age played a significant role; individuals typically needed to fall within the range of 18 to 65. Additionally, having Type 1 diabetes for more than 5 years and experiencing severe hypoglycemic complications, often with little to no warning or awareness, were key criteria. Murray met all these requirements.

The necessity of immunosuppressants was thoroughly explained. The benefits of the transplant clearly outweighed the risks of further complications, particularly given that conventional insulin therapy was insufficient in controlling his severe hypoglycemic episodes.

Under the expert care of Dr. Shapiro, Murray underwent the islet cell transplant. While the transplant did reduce his insulin requirements, it didn't eliminate them entirely. Consequently, he needed a second islet cell transplant, which, I learned, is not uncommon. Within a few weeks, Murray found himself liberated from insulin injections.

He felt elated and relieved, freed from the daily burdens of monitoring and injecting insulin. He often expressed his gratitude, asserting, “Dr. Shapiro and his research team are incredible; they will find a cure eventually. I wish my mom could have witnessed this!”

Sadly, our mom had passed away roughly four years before Murray's transplant. Nonetheless, Murray remained under careful follow-up care for his new kidney and islet cells. Initially, the immunosuppressant drugs seemed to be effective from 2015 to 2021.

However, as is often the case, they came with side effects. Murray began to suffer from a chronic cough that was inadequately managed by various walk-in clinics. Eventually, a chest x-ray revealed a lung mass.

Tragically, it was deemed inoperable, and Murray passed away in 2021. His spirit forever intertwined with the hope and resilience that characterized his journey.

Peggy Lavoie

Registered Nurse & Murray's Sister

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