Jason approached us in 2017 after discovering who we were and our commitment to those diagnosed with PH. His wife had been diagnosed with PAH and passed away several years ago, but he had only found out about our work recently. He shared with us his plans to run an ultra-marathon across the Gobi desert and would like to channel any donations to PHSG in memory of his late wife. This is his story:
It was the year 2012. My wife Rosalie, my daughter Rachel, and I made up my little family. With no warning at all, my healthy wife had suddenly taken ill and was diagnosed with idiopathic pulmonary arterial hypertension. I had never even heard of the disease. Yet, in six short months, the illness took her away from us, and my world came crashing down. I was devastated, and grieved bitterly for the loss of my soulmate.
To help me cope with the intense grief I was feeling, a friend suggested that I take up running. I had never liked running, but I decided to give it a chance and started with short distances. Initially, I struggled with even distances of 2 km, but worked up to running 10 km. As any endurance athlete knows, pain is part of the journey and it was through the intense grief for my wife that I found the strength to keep running. Slowly, I progressed on to half marathons, and then to full marathons. I discovered that I enjoyed running trails more than on the roads. Through all of this, I made friends with many like-minded runners and developed close friendships. With their support, I progressed to running ultra-trail marathons, clocking distances of at least 50 km.
Running has helped me to overcome my grief and get back on my feet sooner than I expected. However, it still took me several years to come to terms with the fact that my soulmate will never return to my side again.
Why I Am Raising Funds for Pulmonary Hypertension Singapore
Pulmonary Hypertension (PH) is an uncommon disease in Singapore. In 2004, the Pulmonary Hypertension Support Group, now known as Pulmonary Hypertension Singapore (PHSG), was started to support patients and caregivers affected by this disease. When Rosalie fell ill, I was not aware that such a support group existed.
After her diagnosis, Rosalie’s strength and vitality waned and she had to stop work. Even walking around the house was difficult, often leaving her breathless. I had to request special work arrangements in order to spend more time at home, and my work performance suffered. Rosalie and I were under tremendous stress, both financially and emotionally. Our young daughter, who barely understood what was happening around her, did not receive our love and attention as she deserved. We felt lonely, lost and helpless.
There is a group of people in my country who could have understood our situation and offered us the mental and emotional support that we badly needed then. Although I learned of the group only after my wife’s passing, I know that it is doing some very crucial work for sufferers of this terrible disease.
The treatment of PH is a tremendous financial burden, and I know the physical, mental and emotional toll it takes on the patients as well as their loved ones. PHSG requires funds to support their projects such as education, facilitating rehabilitation, generating public awareness, and organizing activities to motivate the patients and their loved ones.
Some of my friends are participating in the Gobi March race to raise funds for disabled athletes in Singapore, and this gave me the idea to do my part to raise funds for the PHSG Support Group.
I am endeavouring to cross 250km of desert, rocky terrain and other landforms on foot over 7 grueling days, sustaining myself on only what I can carry, and the drinking water that will be provided. It will be exhausting; it will be uncomfortable; it will even be painful. However, it will be meaningful to me because I am raising funds to help the patients and loved ones of the disease that claimed my late wife.
I live with the regret that I was unable to do much for Rosalie while she was suffering. Now, in her loving memory, I hope to raise funds for PHSG. I know all too well the kind of suffering PH patients are going through. I know that Ros would approve.
–Jason Wong
Jason completed the Gobi March over an astounding 250km and helped us raise a few thousand dollars to support our activities. View his pictures here.