Every Meal Is a Science Experiment: Raising Zara with Isovaleric Acidemia
At the center of every calculation is not a medical condition. It is Zara.
When people first meet our daughter Zara, they do not see a rare metabolic condition.
They see a lively little girl with a strong personality. They see a younger sister, a daughter and a child who wants to explore, play and eat the same things as everyone around her. They see Zara—not Isovaleric Acidemia.
That is exactly how we want it to be.
However, behind much of Zara’s ordinary childhood is a considerable amount of planning, calculation and worry. There are food labels being checked, protein amounts being counted, meals being prepared separately and emergency plans sitting quietly in the background.
I once described feeding Zara as making every meal into a science experiment. It made people laugh, but it is probably the most accurate way I can explain it.
Food is never simply food in our home.
Receiving a diagnosis we had never heard of
Zara has Isovaleric Acidemia, commonly known as IVA. Before her diagnosis, it was not a condition we knew anything about. Like most parents, we had never imagined that our child might be born with a rare metabolic disorder or that we would have to learn an entirely new language just to keep her safe.
IVA affects the way Zara’s body breaks down leucine, an amino acid found in protein. Because her body cannot process it in the usual way, harmful substances can build up, particularly when she is unwell or her body is under stress.
That simple explanation took us a long time to understand emotionally.
As parents, you are suddenly being told that something as normal and necessary as protein must be carefully managed. You are introduced to medical formulas, metabolic specialists, emergency regimens and words you may never previously have encountered.
You listen, take notes and ask questions, but part of you is still trying to process the fact that this is now your child’s life.
In the beginning, the fear can become bigger than the child.
You read about what could happen. You worry about illness, food, development and the future. You wonder whether you will recognise the warning signs quickly enough. You question whether you have measured something correctly or misunderstood an instruction.
Over time, however, the child begins to become bigger than the diagnosis again.
Zara has helped us do that.
Learning that food can also be medicine
Most families can decide what to make for dinner based on what they feel like eating, what is available in the fridge or what can be prepared quickly.
Our decisions have an additional layer.
How much protein has Zara already had? What is in this product? Has the recipe changed? How much can she safely eat? Does this portion need to be weighed? Has she had her medical formula? Is she eating enough energy to prevent her body from breaking down its own stores?
This is why every meal feels like a science experiment.
We read labels that most people would glance past. We compare products that look almost identical but may have very different protein contents. We measure, calculate and adjust portions. We try to create meals that are safe for Zara without making her feel that she is always receiving something noticeably different.
Her low-protein diet is not a lifestyle choice or a preference. It is part of her medical treatment.
At the same time, we do not want food to become something frightening for her. We want her to enjoy eating. We want her to sit with her family, experience celebrations and develop a healthy relationship with food.
That balance can be difficult.
As parents, we understand the consequences. Zara simply sees what her sister is eating and naturally wants the same thing. She sees food at a party, in a restaurant or on somebody else’s plate. She does not yet understand all the calculations taking place in our heads.
We are constantly trying to protect her without allowing the condition to define every experience.
Illness is never "just a bug"
One of the most difficult parts of IVA is that an ordinary childhood illness can become far more serious.
Children get sick. They develop fevers, stomach bugs, coughs and infections. For many families, the advice is rest, fluids and monitoring.
For us, illness immediately brings a different level of concern.
When Zara is unable to eat or keep food down, her body may begin using its own protein stores for energy. That can place her at risk of metabolic decompensation. The very thing her body does naturally during fasting or illness can become dangerous.
We have learned to watch her closely. We think about how much she is drinking, whether she is eating, whether she is unusually sleepy and whether her behaviour has changed. We know when to begin her emergency regimen, when to contact her metabolic team and when home management is no longer enough.
Hospital visits bring their own emotional challenge.
You arrive carrying an emergency letter and knowledge of your child’s rare condition, often having to explain it to professionals who may never have encountered IVA before. You are frightened, but you also have to remain clear and assertive.
During one particularly difficult admission, Zara was unable to eat and required high-calorie intravenous support while her metabolic condition was stabilised. In those moments, the calculations and routines of everyday life are replaced by something much more basic: watching your child, waiting for results and hoping that treatment has begun early enough.
No parent wants to become confident in a hospital environment, but families living with metabolic conditions often do.
We learn which information matters. We learn how quickly we need to act. We learn that speaking up is not being difficult—it is part of keeping our child safe.
The condition belongs to the whole family
IVA affects Zara most directly, but it has inevitably shaped our entire family.
My wife, Stephanie, and I have had to become a team of parents, carers, advocates, dieticians-in-training and emergency planners. We share information, double-check each other and make decisions that can sometimes feel far bigger than the meal or illness in front of us.
There is also Zara’s older sister, Zoey.
Sibling relationships do not pause because one child has a medical condition. Zoey and Zara still play, argue, laugh and compete for attention like sisters do. Yet Zoey is also growing up in a home where food may be weighed, hospital visits happen unexpectedly and certain rules exist because they have to.
We try to ensure that neither child feels overlooked.
We do not want Zara to grow up believing that she is fragile or defined by what she cannot eat. We also do not want Zoey to feel that everything revolves around her sister’s condition.
That is another balancing act for which there is no perfect formula.
The invisible planning behind ordinary experiences
Many of the moments families take for granted require preparation for us.
A birthday party means finding out what food will be served and deciding what Zara can eat. A restaurant visit means studying menus and asking questions that staff may not always understand. A holiday means carrying medical supplies, formula, documentation and emergency information.
Even leaving Zara in somebody else’s care requires trust and education.
It is not enough to say that she is on a low-protein diet. The person caring for her needs to understand why the diet matters, what she may eat, what she must avoid and what to do if she becomes unwell.
As she grows, nursery and school bring new considerations. Staff need to know that IVA is serious without treating Zara as though she is incapable. They need to understand her dietary management and emergency plan while still allowing her to participate fully in school life.
Inclusion, for us, does not mean ignoring her condition. It means understanding it well enough that she can safely take part.
Watching Zara grow beyond our fears
When your child receives a rare diagnosis, it is easy to imagine every possible limitation before they have even had the chance to show you who they are.
Zara continues to challenge those fears.
She is not a diagnosis in a medical file. She is a developing, determined child with her own preferences, moods, strengths and sense of humour. She does not wake up thinking about IVA. She wakes up wanting to play, explore and be part of whatever is happening around her.
That has been one of the greatest lessons for us.
The condition requires respect. We cannot become complacent, and we will always need to manage it carefully. However, respecting IVA does not mean allowing it to take ownership of Zara’s identity.
As she gets older, our role will gradually change. At the moment, we carry most of the knowledge and responsibility. One day, she will need to understand her own body, calculate her own diet, recognise when she is becoming unwell and explain IVA to other people.
That future is both hopeful and frightening.
We want her to become independent, but independence with a metabolic condition must be taught carefully. It cannot simply be handed over all at once.
For now, we teach through small moments. We talk about which foods are hers. We normalise her formula and routines. We try to answer questions honestly at a level she can understand.
Most importantly, we try not to pass all our fear on to her.
What we want others to understand
We want people to understand that managing IVA involves far more than avoiding certain foods.
It is constant decision-making. It is preparation and vigilance. It is knowing that a stomach bug may require an emergency hospital visit. It is checking whether a product’s ingredients have changed. It is carrying medical information and hoping you never need to use it.
But we also want people to understand that Zara is not a tragedy.
Our life is not defined only by fear, hospitals or restrictions. It is also filled with the same noise, laughter, exhaustion, sibling arguments, affection and chaos found in many homes with young children.
IVA is part of Zara’s story, but it is not the whole story.
To another family receiving this diagnosis, I would say that the beginning is overwhelming because you are trying to understand a lifetime’s worth of information all at once.
You will learn.
You will learn the calculations, the warning signs and the questions to ask. You will become more confident speaking to medical professionals. You will discover foods and routines that work for your family. You will make mistakes, worry that you are doing everything wrong and then realise how much knowledge you have gained.
There will still be difficult days. There will be fear. There will be moments when you wish your child did not have to carry this.
But there will also be an ordinary childhood.
There will be laughter, birthdays, family holidays, favourite foods, nursery days and bedtime battles. There will be a child who continues to grow while teaching you that she is capable of far more than you initially imagined.
Every meal may still feel like a science experiment in our house.
But at the centre of every calculation is not a medical condition.
It is Zara.
– Curtis, Zara’s father
curtis.huysamen@gmail.com
Want to hear more? Listen to the podcast!
Curtis has a podcast called Teachable the Podcast. In this episode he and his wife sit down to talk about their experience with Zara from diagnosis to learning the diet and watching her grow.