From tragedy to triumph: Living with juvenile diabetes

From tragedy to triumph: Living with juvenile diabetes

We all have women in our lives who we admire for their resilience and grace in the face of personal adversity. For me, one such woman is my friend Melissa Brewster, devoted mother of three girls, two of which have been diagnosed with type 1 (juvenile) diabetes. She is a hero and an inspiration, and her story teaches us all invaluable lessons of courage, dedication and endless motherly love.

Two and a half years ago Melissa Brewster and her husband Simon were on holiday in Thailand with their two girls, three-year-old Gemma and 16-month-old Gia. It should have been the perfect family holiday, but Melissa started noticing something wrong with little Gia. She was not her usual, playful, toddler self. 

Melissa started researching her symptoms — extreme thirst, frequent urination, crankiness, fatigue and rapid weight loss from her “to-die-for baby chunky legs”  – and convinced herself it was type 1 diabetes. “She was showing text book signs. My husband and friends told me I was crazy. Our paediatrician did, too — twice!”

Melissa pushed on with life, but within a few weeks Gia had grown completely listless. “I was five months pregnant with (now two-year-old) Grace, so Simon took Gia to another doctor, and she was admitted for a bowel obstruction right away. I knew something still wasn’t right and asked them to run more tests. A few hours later they came back and told me she had diabetes.”

Gia was diagnosed with Diabetic Ketoacidosis (DKA), a serious condition that happens when blood sugar levels are too high and left untreated for a prolonged period. Gia was transferred to ICU — if she hadn’t, she would not have made it through the night.

“I was very angry and so sad.  I looked at my baby and could only ask ‘Why her?’  I watched as nurses and doctors feverishly hooked her up to more machines.”

Apart from the stress, Melissa could not have prepared herself for the flood of guilty feelings that followed. “Type 1 diabetes doesn’t run in either of our families. I was in total shock. I felt ashamed — what would people think of us? What had I done wrong? It broke my heart to think that once everyone knew, they would look at their own children and thank their lucky stars it wasn’t them. Looking back, it was all so selfish, but I didn’t cope very well. It was all a blur.”

Type 1 diabetes doesn’t run in either of our families. I was in total shock. I felt ashamed — what would people think of us? What had I done wrong?

Once Gia had stabilized she was moved to Queen Mary Hospital. She spent the next few weeks there while the family learned how to manage her condition day-to-day.

“We learned how to check her blood sugar levels, give her insulin injections — I had 15 people watching me inject Gia for the first time — check for ketones and how to balance her diet by measuring everything,” says Melissa. 

Eventually she and Simon wiped away the tears, put on their brave faces and took the challenge in stride. “We didn’t sleep much when we first came home, and we still don’t — alarms are always going off in our house.”

Despite the challenges, life when on. They started adjusting. “Gia was so brave, she stopped crying during the injections after just a week and starting holding out the toe or finger she wanted to be pricked,” she laughs while thinking about her tough little cookie.

And then the unimaginable happened.

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Melissa with Grace, Gia, Gemma and Simon

A few months ago, Grace, her youngest, was diagnosed.

“At first Grace didn’t show the typical signs of diabetes, but there were some familiar signs I recognised. After a Mother’s Day brunch in May this year we noticed how tired and irritable she was after she ate.” With Gia’s blood sugar monitor, they checked her finger. Her reading was off the charts.

“I nearly fell to the floor. In my heart I knew what was coming but I couldn’t accept it until I heard it from the doctor.” The family immediately contacted Gia’s endocrinologist and Grace was admitted to Queen Mary Hospital two days later. Thankfully, her condition was identified early, so Grace’s hospital stay was only two nights.

“Even though Grace was older when she was diagnosed, she screamed for a month during her injections.  Those same tears from two years earlier came flooding back.  One child is more than enough, but two! I couldn’t help wondering what I did wrong and what I could have done differently.”

One child is more than enough, but two! I couldn’t help wondering what I did wrong and what I could have done differently.

At least her children’s brave reactions have made it easier. “When we told Gia and Gemma that Grace has Type 1 diabetes as well, Gia hugged her and told her ‘Don’t worry, I’ll take care of you.’  Gemma cried that she was the only one who didn’t have it.”

On good days, the girls receive their standard four insulin injections, on bad days they may need more. “Hypoglycemia (low blood sugar) happens at anytime. When it does, they need to eat something to quickly raise their blood sugar levels. It’s always fun when this happens at 3am. That means a juice box – they drink it in their sleep. Yes, health community, juice boxes save lives!”

Although it’s tough, Melissa does manage to find humor and a silver lining. “I look at things so differently since Gia’s, and then Grace’s diagnosis. My wants, needs and goals have changed for the better. After all, if I don’t have my family I really don’t have anything at all. Even the toughest things that come my way can’t compare to the helplessness I feel every time I hold them still for a routine blood test.”

“We all want more in life but the material things just don’t matter.  As much as I try, that reminder of almost losing Gia never leaves my mind.  She gives the biggest hugs and has a personality to match.”

Brewster girls

Gia, 4, Grace, 2 and Gemma, 6

MAYYA Movement: What is the biggest misconception about T1D?

Melissa Brewster: That T1D sufferers can’t eat sugar. They can – they just need more insulin. I love when I’m told that they shouldn’t have sugar because they have diabetes. Gia, my four-year-old, understands at a young age how she feels after over-indulging at a birthday party. My daughters get treats but this day in age there are so many healthy alternatives. I make everything so I know exactly what is in it. I’m selective about which restaurants we visit. 

MM: How do you manage the day-to-day?

MB: Through a team effort and regimented schedule. We have to check the girls several times a day which includes waking up at midnight and 3am – I couldn’t do it without Simon. I’m very thankful Simon doesn’t have to travel a lot for work because I fear I’ll sleep through a 3 am alarm.

MM: Practically, what is one of the hardest parts of being a mother and carer to two diabetics?

MB: The meal planning. I keep our meals planned because I have to measure everything for their carbohydrate to insulin ratio, snacks prepared and I try to keep our home as organized as possible. I feel like I am an exploding lunch box at times, but I am humbled that I am able to provide for my children and give them the care that they need. 

I feel like I am an exploding lunch box at times, but I am humbled that I am able to provide for my children and give them the care that they need.

MM: What is the latest research on diabetes and do we have any greater understanding of how it’s caused?

MB: The exact cause is unknown, but it occurs when the body’s own immune system starts attacking the pancreas. It can be genetic, but it can also be caused by environmental factors, like when a virus weakens the immune system. Read more here.

MM: How did you cope in those first few months of finding out about Gia’s diagnosis?

MB: I didn’t cope very well.  It was such a blur. I used Emotional Freedom Technique (EFT) to self-medicate myself.  It’s a tapping method used to treat trauma, illnesses, pain, and athletes use it for performance.  I studied it in November and I’m thankful I took this course — it helped me put my selfish emotions aside and focus on Gia.  At 16 months, she could barely vocalise what  she wanted or how she was feeling.

MM: How do you continue to manage yourself and your own health /sanity today?

MB: I’m convinced I’ll never find that perfect balance so I stopped looking! I’m not doing anything out of the ordinary that any mother wouldn’t do for her children. However, I do need flexibility to fit regular doctor’s visits in and lunchtime injections at school. A big lesson of being a mother is learning that it’s OK to take time for yourself. My guilty pleasure is a foot massage with a glass of wine. 

Another important aspect our our routine is regular exercise — it keeps me mentally sane. I enjoy my gym workouts, yoga sessions and I recently started playing tennis again. I want to be a healthy role-model for my daughters: “Everybody needs to exercise a little each day” is our motto at home. All three of my girls have some sort of activity that keeps them moving.

MM: What advice would you give to a parent who discovered their child had T1D for the first time?

MB: The grieving takes a while and it’s natural, so let it take its course. It’s more then you can imagine to swallow, but you will laugh and smile again. 

Get in touch with other Type 1 families. They know what you are going through — it’s truly the best therapy. The support through all of the changes and challenges diabetes presents to a family are really hard in the beginning. Facing those mixed with emotions is not sustainable. Youth Diabetes Action (YDA) has a wonderful group of families that meet regularly to talk to newly diagnosed families. 

[Editor’s note: The original version of this story was published incorrectly noting that it was Gemma, not Grace, diagnosed with T1D. Gemma is the very proud and healthy older sister of two younger sisters bravely living with T1D.]

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What is Juvenile Diabetes?

Type 1 diabetes (T1D) (once referred to as juvenile diabetes) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone people need to get energy from food. T1D strikes both children and adults at any age and suddenly. Its onset has nothing to do with diet or lifestyle. Though T1D’s causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers play a role. There is currently nothing you can do to prevent it, and there is no cure.

Living with T1D is a constant balancing act. People with T1D must regularly monitor their blood-sugar level, inject or continually infuse insulin through a pump, and carefully balance their insulin doses with eating and daily activities throughout the day and night. Take advantage of JDRF T1D resources and support.

While people with T1D rely on insulin therapy to control their blood sugar, insulin is not a cure nor does it prevent the possibility of the disease’s serious side effects. Even with intensive disease management, a significant portion of their day is still spent with high or low blood-sugar levels, placing people with T1D at risk for devastating complications such as heart attack, stroke, blindness, kidney disease and amputation.

Source: JDRF.org 


IMG_0408Melissa Brewster hails from Batavia, New York, but has called Hong Kong home for the past seven years with her husband Simon, an Australian who grew up in Hong Kong. They have three beautiful daughters: Gemma, a sweet 6-year-old, Gia, 4, the most dynamic of the bunch and Grace, a two-year-old who is the joy of the family.

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