Zecia’s rare disease helped me understand that a father’s purpose is to provide his child with a fulfilling life of joyful pursuits and interests.

There is no perfect guidebook that teaches a man how to be the best dad for his children. However, there are infinite ways for them to improve and evolve. For me, my teenage daughter, Zecia, who has a rare disease, helped me become the father I am today.

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Symptoms showed up when Zecia was little. Her stomach was always abnormally bloated, and whenever she hurt herself, her injuries would take a long time to recover. After more than a year of these ongoing symptoms and a series of medical tests, we finally discovered the underlying cause – Gaucher disease. It is a rare genetic disorder that causes a deficiency of an enzyme known as glucocerebrosidase, which results in the build-up of harmful quantities of a fatty substance named glucocerebroside in cells throughout the body. Over time, multiple organs, and within the bone marrow, spleen, and liver, become enlarged and their function is impaired.

The only treatment option available to her is enzyme replacement therapy, where the enzyme she lacks, glucocerebrosidase, is given to her via intravenous (IV) infusion through her vein. For more than a decade, she has been visiting KK Women’s and Children’s Hospital (KKH) fortnightly for her treatment. She will continue to be on lifetime medication, where the dosage will increase as she grows older and gains more weight. Without treatment, Gaucher disease would be life-threatening for Zecia. As Gaucher disease results in an extremely low blood platelet count, Zecia is prone to prolonged injuries, so she has to be extra cautious when she carries out physical activities such as sports because once she hurts herself, her body will take an extended period to heal.

People may ask: Isn’t it difficult to be a father of a child with such a unique illness? When we first found out, my wife and I were so lost. Why us and how did this happen? It was never easy, especially getting used to bringing Zecia for her bi-weekly enzyme transfusions and watching her endure the pain from inserting the IV needle into her arm. On top of worrying about our child’s health, we had to deal with the exorbitant treatment costs, which is more than S$24,000 a month. Where would we get the money for her treatment? Truly, I was close to despair as it felt like our world was crumbling with so many things being thrown at us.

That wasn’t until the Rare Disorders Society (Singapore) and the medical social workers at KKH introduced us to the Rare Disease Fund (RDF), which could help us ease the financial burden. The RDF was our lifeline, with help for Zecia’s medical bills. Even when my wife and I are no longer around, we hope the RDF will continue to fund Zecia’s treatment. The RDF has truly lightened our load.

As a father, it is my responsibility to provide Zecia and her siblings with a fulfilling childhood that is as normal as possible so that they live each day to the fullest. I have always encouraged Zecia to explore her interests. Bright and curious from young, she loved art, and as she grew older, she became drawn to playing the piano. I even saved up to buy a second-hand piano and arranged piano classes for her. She also loves baking – my wife and I must have inspired her as both of us enjoy cooking and exploring recipes! After she expresses her interest in these new hobbies, I try my best to provide her avenues to learn and practise by purchasing an oven and enrolling her in baking classes as well. I do not mind putting in more hours at work if it means I can provide support for all my three daughters to pursue what they love.

Now that Zecia is 15, she is no longer the little girl she once was and I now have to raise her as a young adult, including to effectively communicate as one. Even though the process of caring for Zecia has not always been sunshine and rainbows, I am immensely grateful for every moment I spend with her, knowing very well that there are also other families who experience more challenges than mine. Like me, Zecia is cheerful and seeing her smile while we share the regular motorbike rides to the hospital never fails to reinforce my own optimism and perseverance to believe in myself and do whatever I can as her father.

As Zecia continues to thrive against all odds, my only wishes for her are that she lives a joyous life with treasured friends around her, and the RDF supporting her along the way. Afterall, no one is to blame for whatever that has happened. Most importantly, the child is never to be blamed. The best and simplest thing we can do as parents is to love each of our children with all our heart. As long as a child is well-loved by their parents, they will live happily. Thanks to Zecia and her younger siblings, I can be a better dad every day.

There is a Chinese saying that a daughter was her father’s lover in his previous life. While it may or may not be true, I believe in treasuring all my three daughters and the memories we have created together. This Father’s Day, I would like to encourage all fathers out there to be the beacon of hope in the family – always believe that miracles can happen and never give up.

By Avan Chew.

ABOUT THE AUTHOR

Avan Chew, 44, and his wife are parents to three daughters. His eldest, Zecia, 15, has Gaucher Disease, a rare illness that affects 1 in 60,000 people globally.

ABOUT THE RARE DISEASE FUND

The Rare Disease Fund is a charity fund that seeks to provide long-term financial support for patients with rare diseases requiring treatment with high-cost medication. The RDF is managed by the KKH Health Fund (KKHHF), which is part of the SingHealth Fund and supported by the Ministry of Health. For every dollar donated to the RDF, the government will match $3.

To donate, you may do so here. For more information on the RDF, you may visit here, the RDF Facebook page, or the RDF Instagram page.

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