(Photography by SooPhye)
In 1980, members of a small community in Phoenix, Arizona, came together to realise seven-year-old leukaemia patient Christopher James Greicius’s dream of becoming a police officer for a day. Little did they know that the initiative would lead to the birth of an international organisation, driven by the strength, joy and hope brought about by the simple granting of the wish of a child with a life-threatening illness. Today, Make-A-Wish has a worldwide presence and serves children in nearly 50 countries. Malaysia became its 35th affiliate country in 2010.
The first wish granted by Make-A-Wish Malaysia was nine-year-old Aqilah’s. Diagnosed with rhabdomyosarcoma, she dreamt of becoming an air stewardess. The Wish Day, as it is called, sometimes extends over a day and is called a Wish Journey. During our interview, CEO Irene Tan is happy to report that her team has granted 75 wishes this year, surpassing the target of 70.
Journey in service
Anyone who has had fulfilling encounters in service would agree that there is much to be gained from the experience. Both Tan and the royal patron Tengku Zatashah Sultan Sharafuddin Idris Shah attest to this. “I had left the corporate world and was considering many different charities,” says Tan. “Make-A-Wish Malaysia was only starting then, and I joined as a volunteer in 2011. I must say that I really enjoyed my work although I was only helping out here and there with fundraising and communications. It ticked many of the boxes in terms of what I was looking for. With every job I took, I went home feeling quite happy. It has been a challenge but also such an amazing journey for me,” she explains. She became CEO four years ago.
Tengku Zatashah, daughter of the Sultan of Selangor, became royal patron three years ago but her work in service to others began long before that. She attributes this strong inclination as a result of her UK education, which had a solid community service element to it. Upon returning to Malaysia, Tengku Zatashah participated in various community service endeavours, including a soup kitchen. Not too long ago, she also spearheaded a zero food waste programme. “When it comes to the community and giving, the important thing is to experience it first-hand. If you can give a cheque, that’s great! But I think if you can go and do things yourself on the ground, it is far more rewarding.”
The primary goal of Make-A-Wish is to give hope, strength and joy to children battling life-threatening illnesses. Tengku Zatashah fondly recalls her experience in planning a Wish Day for young Muhammad, who had lymphoblastic leukaemia. His wish was to meet his idol, the goalkeeper for the Selangor football team. Not only did Muhammad get to meet Norazlan Razali, he also got to walk out with him onto the pitch as his whole family watched the game from the royal box. “We like to include the family when granting the wish,” says Tengku Zatashah. “The whole point is not only to give the child an unforgettable time, but also the parents and siblings. When there is a sick child in a family, the attention is often on the child and the siblings may feel neglected. So, we try and include the child’s siblings and friends so that everyone has something to look forward to. Ultimately, it’s about helping a family.”
When it comes to the community and giving, the important thing is to experience it first-hand. If you can give a cheque, that’s great! But I think if you can go and do things yourself on the ground, it is far more rewarding
On her experience thus far, she says: “It is a charity that I have always been fond of and I love what they do … For me, it has been so fulfilling to experience Wish Journeys with the Make-A-Wish family — Irene, the board members and volunteers — and help make the children’s wishes come true. Each Wish Journey is so different but so rewarding nevertheless. What I love is that I continue to stay in touch with the children afterwards. (Sometimes) I also get to see them and how they have been doing via Instagram!”
Making a difference, one wish at a time
Many may be familiar with the Wish Day concept itself but a lot goes on behind the scenes. The elaborate process begins with the doctors who connect the organisation and the children. “Doctors act as the first level of filtration. They will identify the patients who are really in need of [the granting of] a wish to help with their medical treatment. The wish does not replace medicine, instead it works in tandem with medication,” says Tan.
Make-A-Wish Malaysia currently works closely with five government hospitals (three in Kuala Lumpur and one each in Ipoh and Penang). “We choose to work with government hospitals because that will give us the right candidates — children who are really in need. These hospitals have children coming from all over Malaysia and that is important to us as we want to reach out to as many children as we can,” she adds.
Once the requirements have been met, trained volunteers communicate with the child to determine what he or she wants. “Volunteers need to be patient and have the right personality. The children generally see many adults come and go in the hospital — mostly to administer medication, draw blood or give an injection. So, the ice-breaking session is very important. Some children are very shy,” says Tan. The standard operating procedure for interviews is provided by the international Make-A-Wish office, she explains.
Every wish is different. It may not always be extravagant but it has to be meaningful to the child. “It has to be something that is empowering and makes them want to fight the illness and do this again next time. Most of the wishes are rather simple … we try our best to make it an extraordinary, tailor-made experience,” Tan says.
Most of us will remember how excited we got about an impending event when we were young. Make-A-Wish hopes to capitalise on this eagerness and exhilaration by creating an unforgettable experience that will motivate the child in the battle he or she is facing. “We see the child being more interactive — even before the wish is granted,” Tengku Zatashah says.
“Doctors have seen and confirmed how it has positively impacted the health of the child, psychologically as well as physically. In certain states in the US, Make-A-Wish is automatically connected to any child who comes to the hospital with a life-threatening illness,” she says, a move that she and Tan hope will be adopted here as well.
For many sick children and their families, the Wish Day or Journey is a welcome break from the dreaded home-to-hospital-and-back routine and Tan sees the far-reaching advantages of getting everyone involved. “We want the family to remember this day as well. We also hope that they will always know that there are people supporting their child and them, and that their child can go beyond what he or she imagines they are capable of when faced with any battle in life,” explains Tan, summing up the mission of the organisation. “When we meet the families, not only do we hear the stories of the sick child but also what the families are going through. The families that we work with are at a less-advantaged position (to begin with) and now they have the added burden of medical treatment.”
While all the wishes are special in their own right, one that has stayed with Tan was that of the late Chloe. The little girl’s selfless wish did not fall within the usual four categories — “I wish to be”, “I wish to go”, “I wish to meet” and “I wish to have” — but it was to benefit other sick children. “Chloe was a great artist and she wanted to have an art exhibition to sell her paintings and make another wish possible for another child … It is unfortunate that we lost her but this wish will always stay in my heart because she never asked for anything for herself. This is a fifth category that we are introducing to the children, but at the end of the day, it is completely up to the child,” Tan explains softly.
When we meet the families, not only do we hear the stories of the sick child but also what the families are going through
While the two women have many happy memories to look back on, such moments define their work in service and motivate them to keep going. “People ask me how it is that I do not cry on Wish Days or when I meet the child. My answer is that I see it from the positive (angle). I do not look at the child with pity. I view it as us giving the child the best memory by granting his or her wish and that the child will pull through.” And there have been various reasons for Tengku Zatashah to believe so as well. “There are many stories of the child doing so much better afterwards. Some children were very frail and fragile but they blossomed after the granting of their wish. For me, I choose to focus on how the granting of the wish gives them hope, strength and joy. We look at everything with hope,” she says, smiling.
“That hope is fuel for me and for the volunteers. It is not about sadness,” explains Tan in agreement with Tengku Zatashah. “Every wish ends on an upbeat note. We believe that these kids are loved — by their family, the doctors and the volunteers who rally round for them. Though we do lose some of them,” Tan says, her voice breaking.
She remembers Haris, their little “fireman” who passed away about 11 months after his wish was granted. But as the two women speak about him, the emphasis is on the high points, such as how happy he was on Wish Day and his eagerness to go back to school.
Challenges and misconceptions
In many ways, volunteers form the backbone of a non-profit organisation and Tan is grateful for those she has had the privilege of working with. “It is difficult to find good volunteers. Our expat volunteers tend to move often and the locals move on naturally when they get married or have children. So, we are constantly recruiting.”
Tengku Zatashah is very hands-on in her role as royal patron and spends a lot of time volunteering. “We started seeing a change when Tengku came on board. Her active involvement sent out a completely different message to the committee and volunteers, who came to see that she was not just going to be a figurehead. When the image of the patron is beyond just a photograph in the office, volunteers realise that this is a hands-on job and not just something you sign up for to put on your CV (curriculum vitae),” Tan says with a laugh.
Although the organisation is well-received in general, when it comes to public perception, there are some who are sceptical. “A lot of parents think Make-A-Wish is a ‘last wish society’ and find it taboo when a doctor brings it up,” Tan says. The organisation continues to raise awareness on its objectives to counter this.
While each wish that is granted is priceless, it does, however, cost money. Every now and then, Make-A-Wish Malaysia is blessed to have generous sponsors who are able to make some extraordinary wishes come true. For instance, Murkeish — a hardcore fan of Manchester City football club — had the opportunity to see his favourite football star in action, thanks to Etihad Airways, who flew him and his family to Manchester, the UK. (Editor: We are happy to report that Murkeish is thriving and does not have to undergo chemotherapy or a bone marrow blast any more as a result of the priceless experience that has impacted him and his family. In eight years, he will be able to call himself a cancer survivor.)
Sponsors and donors also contribute greatly to the continuation of the organisation’s efforts. According to Tan, the absence of a tax-exempt status does pose some challenges in this respect. “Donations come from people’s hard-earned money and we are facing a hurdle because we do not have tax exemption. That said, we understand where the governing body is coming from as we do not fall squarely within any of the three boxes that a charity helping children should fall within — medical equipment, education or poverty.”
“(One could argue that) it is a ripple effect and that we actually tick all the boxes. When a sick child is granted his or her wish, we see an immediate difference in the child. Doctors and nurses confirm that. The parents are uplifted and more willing to go through this battle. The community sees a difference when the child goes back to school,” Tan says, explaining all the non-tangible benefits derived from the organisation’s work.
Not one to be deterred by this obstacle, Make-A-Wish Malaysia continues to work hard, spreading cheer to children, some of whom have spent most of their lives in a hospital bed. Tengku Zatashah’s recent fundraising endeavour was in the form of seven limited-edition Sereni & Shentel x Tengku Zatashah hairband designs for Make-A-Wish. Named after seven Make-A-Wish girls, 50% of all proceeds from the Borneo-based brand’s hair accessory collection will be donated to the organisation.
Make-A-Wish Malaysia’s upcoming fundraiser is the Wish Ball. Beneficiaries, sponsors and well-wishers will come together for an evening of merriment while raising funds for 2018 and hear all about the wishes granted this year. Some of the children will tell their stories. Throughout the years, Make-A-Wish is a testament to the power of a wish, bringing joy, strength and hope to children all over Malaysia. So, here’s to the remarkable snowball effect from that very first wish granted in Phoenix, Arizona. Long may it continue, we say.
This cover story appeared in the Nov 27, 2017 issue of The Edge Malaysia. Save by subscribing to us for your print and/or digital copy.
