Gen Y Speaks: My child is the only one in Singapore with this disease. Every day he is alive is a blessing to us
As parents, all we want for our children is to grow up healthy.
As parents, all we want for our children is to grow up healthy.
But this seemed impossible for my first child, Christopher. We suspected that something was wrong when Christopher sustained wounds during two separate incidents. He did not stop bleeding for 24 to 36 hours.
The second time it happened, we immediately brought him to the hospital. He went through countless genetic tests, some of which were sent overseas.
It was a gruelling two-month wait.
At just six months old, our son was diagnosed with Bile Acid Synthesis Disorder. His liver is unable to produce cholic acid, which is essential for the body to break down fat.
As the flow of bile is disrupted, toxic bile acids will result in progressive liver damage which will lead to liver failure if left untreated.
We were at a loss.
Why did this have to happen to us, especially with the chances of it occurring being incredibly low?
To put things into perspective, there are only 50 individuals in the world who suffer from this disorder. My son is the first and only case in Singapore.
Not only did we have to worry about the expenses, we were also concerned about the effectiveness of the medicine.
Plus, how is he going to cope, both mentally and emotionally, when he realises the challenges our family has faced and will face? Would Christopher be able to handle this when he is older, when we are no longer around?
I can still remember when my wife, who was in tears, asked me shortly after we received Christopher’s diagnosis what we were going to do. At that point, I could only muster up the words “I don’t know”.
With so much uncertainty, the only thing we could do was to carry on. We tried to find alternative medication, checked on whatever financial aid we could apply for, and cared for Christopher as best we could.
I was going through a challenging time trying to hold the family together, as I was wrought with worries and fears about our finances.
We did not know how we would be able to keep Christopher alive with the astronomical cost of his lifelong medication, which was S$7,000 per month at the time.
This figure would only grow exponentially as Christopher grows older and gains more weight.
Without it, he would suffer from liver damage, then liver failure, and eventually death.
A STRONG SUPPORT SYSTEM
Every family is different and goes through its own trials and tribulations; ours just happens to be our son’s sickness.
As an individual, I wear the hats of husband, father, son, son-in-law, and public servant. Yes, everyone else has multiple hats to juggle and I am no exception.
However, I am fortunate to be able to juggle these hats only because of the support I have from family and friends. I would absolutely not be able to do it alone.
As a father of a child with a rare disease, I would just like everyone to be more compassionate and kinder to one another.
Unfortunately, rare diseases are not easily understood simply because they are rare.
But as with any difficulty, a little bit of support or a kind word of encouragement can go a longer way than one might think.
We do not expect people to fully understand or remember every aspect of Christopher’s condition, especially since he is the only person in Singapore with it.
But I do feel a tinge of sadness when people ask, “How is Chris? Is he still on his medication?” I always answer accordingly and tell them that his medication will have to be lifelong.
Still, I think to myself, “If only it were so simple and he could be cured.”
Each rare disease patient has a unique set of challenges but I would wish for parents of a child with a rare disease to be blessed with unlimited strength, patience, and funds.
RARE DISEASE FUND
Our worries dissipated when we found out about the Rare Disease Fund. It was truly a godsend and a bright ray of hope for the future, as its slogan says, “Hope for a Lifetime”.
Managed by the KKH Health Fund (part of SingHealth Fund) at KK Women's and Children's Hospital, this is a charity fund that seeks to provide long-term financial support for patients with rare diseases that need treatment with high-cost medicines.
I suppose it feels like we were thrown a lifeline; a lifebuoy after drowning at sea. We were overwhelmed but the fund rescued us from the deep waters by covering most of Christopher’s medication for life.
From feeling lost to being filled with hope, we are grateful that we can watch Christopher grow up well because of the bile acid replacement therapy. The fund has lifted such a massive financial burden off our shoulders and changed our lives indelibly.
Yet, the journey is far from over. It has only just begun. We still have to swim back to shore on our own, albeit with the help of the “lifebuoy”.
Even with the fund’s assistance, we still have to dedicate a significant portion of our personal income to raising Christopher. We have since changed our spending habits and reevaluated our big financial decisions.
Thankfully, we did not need to make any adjustments to Christopher’s lifestyle. I am most grateful that Christopher is able to lead a normal life because of how well he responds to the medication.
While the fund supports us financially, our families rallied around us practically, emotionally, and spiritually. One could say that Christopher’s condition drew us all closer together.
Receiving funding like this would be impossible without the immense support and donations from the public towards platforms like the Rare Disease Fund.
We hope that more will step forward to help children like Christopher grow up healthy.
Looking back at the past six years, our journey has not been marked by large, dramatic moments, but by the small steps we take, day in and day out.
Not only is he alive today, he is thriving. He can learn, play, and grow. He is able to eat and drink anything he wants, run around, get injured, fall sick, and recover. Just like any other child.
He can do all these without being affected by his condition, only because we have access to his medication. Every day that he is alive is a blessing to us.
Christopher seems to have boundless energy. Sometimes, we cannot keep up with him because he is always up and about, and raring to go!
My son is also very good-natured and kind. He is openly affectionate and eager to express his love to all of us, especially to his younger sister.
It’s easy to forget the challenges he has endured, just by looking at him now. And I will continue to wonder and worry about how Christopher will be able to cope after my wife and I are no longer around.
But we have to carry on and give him our best right now, because that is all we can do. That is all we must do.
ABOUT THE AUTHOR
Geoffrey Toi, 38, is a public servant and a father to a six-year-old son with Bile Acid Synthesis Disorder, a rare disease.
Related topicsHealth Gen Y Speaks rare disease Rare Disease Fund
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