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Family Story: A rewarding journey

If we liken life to a marathon, some people enjoy sprinting on the track, while others prefer a leisurely jog to savor the scenery along the way. However, when chronic illness becomes a formidable obstacle on the track, will you choose to stand still or give up; or will you lock onto your goal, persistently move forward step-by-step, overcome all difficulties, and cheer for your own life?

Kai-yeung, who will be entering Secondary 5 (Form 5) this September, has spent the past six months residing at the Ronald McDonald House (the House) in Kwun Tong together with his parents. The purpose of this temporary accommodation was to allow him to recover in a safer and more convenient environment, situated closer to the Hong Kong Children’s Hospital.

This unique experience not only ensured that Kai-yeung received more specialized and professional medical care during his recovery period, but it also allowed him to cultivate deeper emotional bonds with his family as well as his teachers and classmates at school.

Kai-yeung was diagnosed with X-linked Adrenoleukodystrophy (ALD) at around 3 or 4 years old. At the time, the doctors believed that Kai-yeung was not in immediate danger, and as long as he could successfully transition past the age of 15, the disease would no longer pose a threat to his life. However, the dreadful news eventually came when Kai-yeung was 14 years old, just as his father described it: “That time bomb that had been ticking for years had finally exploded.”

X-linked Adrenoleukodystrophy (ALD) is a rare, inherited genetic disorder that typically manifests in children between the ages of 4 to 8 years old, with very few cases occurring after the age of 15. Once the disease sets in, the patient experiences severe symptoms such as difficulty in reading, disorientation, impairment in walking, vision, and hearing. As a result, Kai-yeung’s onset of X-linked ALD had a significant impact on his academic studies.

The unavoidable need of staying at the House

Shortly after Kai-yeung’s condition worsened, he underwent three separate bone marrow transplant procedures using donations from his father. Although the father’s bone marrow was not the optimal choice, the medical team decided it was worth attempting the transplant, as they were unable to find a more suitable donor match within the limited time frame. Fortunately, the bone marrow transplant surgeries were successful and achieved very satisfactory results.

“Although my bone marrow may not have been the ideal choice, I had to at least give it a try for the sake of Kai-yeung’s health,” Kai-yeung’s father pointed out.

After the surgery, the medical team and social workers had suggested that Kai-yeung temporarily stay at Kwun Tong House, as it would be more convenient for him to receive the intensive rehabilitation treatment that would follow at the Hong Kong Children’s Hospital. However, Kai-yeung insisted on returning home to recover, stating, “At the time, I was determined to go back home, as I did not want to stay in an unfamiliar environment, especially one where I was unsure of the sanitary conditions.”

Kai-yeung’s determination to recover as soon as possible was more resolute than anyone else’s. As a result, he was exceptionally cautious about any decisions that could potentially hinder his recovery, such as ensuring the sanitary conditions of a facility would meet his health needs.

Later, Kai-yeung, who lived in a walk-up apartment, suffered a minor accident when he fell in the staircases. Although he was unharmed, the doctors and his family, citing safety concerns, made every effort to persuade him to temporarily relocate to the House.

Life at Kwun Tong House: Studying and Rehabilitation Exercises

After Kai-yeung and his parents moved into the Kwun Tong House, he quickly adapted to the living environment. He said, “The level of cleanliness at the House is much better than I had imagined, especially in the areas I was most concerned about, like the kitchen and bathroom. I’m particularly satisfied with the spacious bathroom in my room, which allows me to easily maneuver my wheelchair in and out.”

The clean and well-maintained kitchen also became a place where Kai-yeung’s parents and the other caregivers staying at the home could gather to exchange cooking tips and provide mutual support.

Kai-yeung’s strong drive to recover as soon as possible was fueled by the upcoming public examinations the following year. “I don’t want my health issues to prevent me from taking the HKDSE exams. I must give it my all in preparing for the exams.”

Ultimately, Kai-yeung’s mother believed that he did not want to be held back a year, and was determined to take the exams together with his long-time classmates. This was the primary reason why Kai-yeung diligently studied late into the night at the House.

“Kai-yeung has known this group of classmates since he started primary school. The school principal and classmates learned that he had temporarily moved to live in Kwun Tong House, and they all said they wanted to come and visit him. We are very grateful for the arrangement of the staff here. Not only did they make special space for the visitors, but they also provided a more private space for Kai-yeung to gather with them, play games, and chat around,” Kai-yeung’s mother recalled.

“Additionally, to help Kai-yeung cope with the school exams, the staff here specially allocated their conference room for him to take the online exams. For the sake of Kai-yeung’s academic performance, we are very grateful for the collaboration between the school and the House, ensuring that he could participate in the exams and avoid a drop in his grades.” With a satisfactory result, Kai-yeung did not disappoint everyone in the school internal exams.

When asked what he wants to do the most after his recovery, Kai-yeung said he hopes to continue his studies and eventually major in history. He explained, “I enjoy the history subject because in my first year of secondary school, I had a great teacher who deeply inspired my interest in this subject.”

Growing up in love and joy

In order to return to school as soon as possible, Kai-yeung persistently practiced walking on the circular track outside the third-floor play area of the House. From being able to only slowly stand up in a wheelchair at first, to gradually taking small steps with a walker, to eventually walking 30 laps around the track every day, rain or shine. Another constant, rain or shine, was his father always being by his side to accompany and support him during his walking exercises. Kai-yeung’s mother pointed out, “Since he was young, wherever Kai-yeung wanted to do something that made him happy, his father would be by his side.”

In addition to the meticulous care from his parents since he was young, the constant encouragement and companionship from his aunt have also been important support for Kai-yeung in bravely facing his medical condition and the challenges of recovery. “Kai-yeung has always been very obedient to what his aunt says. During his stay here, his aunt played the role of the best cheerleader, often bringing us supplies. Whenever Kai-yeung wanted to eat something, his aunt would bring it to the House,” Kai-yeung’s mother said.

Kai-yeung’s life journey may not have been smooth, but in an atmosphere of love and joy during his upbringing, he has faced his serious illness without fear, and has courageously written a brilliant chapter for himself.

Photo captions:

  1. Artist Lai Lok-yi accompanied Kai-yeung to practice walking during a visit to RMH in Kwun Tong.
  2. Kai-yeung took a photo together with his parents and aunt in the reception area of Kwun Tong House.
  3. Kai-yeung has a deep bond with his father.
  4. Kai-yeung’s mother and aunt supported each other in caring for Kai-yeung.

 

Collective support

In September, Kai-yeung began Form 5 at HKMLC Queen Maud Secondary School, marking the start of his important HKDSE examinations. The school has closely monitored his health to support his learning needs. After major surgery last year and recovery at Ronald McDonald House, he received constant encouragement from teachers and classmates, who also visited him and sent heartfelt cards.

Before the school year, extra lessons were provided for Form 5 students, and Kai-yeung actively participated. The school adjusted its facilities to accommodate him, implementing a half-day schedule during the first week to help him adapt to campus life.

Most touching were the discreet, spontaneous actions of his classmates, who consistently assisted him while he temporarily relied on a wheelchair. Their support made him feel cared for and demonstrated their love and empathy for him.

Photo captions:
To show their gratitude for the school’s care for Kai-yeung, his parents presented a banner as a token of appreciation at the start of the school year.

 

Taking the first step

The most comforting aspect of RMH is seeing ill children complete their treatment and return home with stable health. However, ongoing care may still be needed.

Our support for these children not only during their stay but also as they transition back home. Recently, Kai-yeung and his family returned to receive rehabilitation guidance from physiotherapists at Tung Wah College’s School of Medical and Health Sciences.

The School provides professional community services to children and other vulnerable groups. Physiotherapists create tailored rehabilitation plans to help children prepare for home life and returning to school. They work with children and parents to design personalized exercises that enhance strength and correct movement patterns, while also guiding parents on how to assist and monitor progress. Families have reported positive outcomes, believing these exercises aid recovery. It is hoped that more children will benefit from this support on their recovery journeys!

Photo caption:

The physiotherapist at Tung Wah College’s School of Medical and Health Sciences provides one-on-one rehabilitation guidance for Kai-yeung.

 

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      Sha Tin House

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      Sha Tin House

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        IN THE KITCHEN/Food Bank

        ItemQty.Approx Monetary Value(HK)
        Organic Sunflower Cooking Oil (500ml)

        30 bottles

        $2400
        Vegetarian Rice Noodles

        30 packs

        $1800
        Soup Packets30 packs$1280

        Organic Gummy Bears (25g x 10)

        30 packs$2100
        Organic Biscuits (400g)30 packs$1200
        Enviromental Friendly Dish Washing Detergent30 pcs$1800
        Saran Wrap / Ziploc Bag/ Aluminium foil/Butter paper30 pcs$1200

        SPONSOR A HOUSE MEAL / DIRECT SERVICE

        Item Details Approx Monetary Value(HK)
        Fresh Fruits Sponsor weekly fresh fruits for 60 guests $3000/month
        Fresh Meat Sponsor weekly fresh meat for 60 guests $4000/month
        Organic Vegetables Sponsor monthly fresh vegetables for 60 guests $4000/month
        Supermarket Coupons Sponsor monthly supermarket coupons for 60 guests $4000/month
        House Meal Sponsor a House Meal for 60 guests $6000/meal

        AROUND THE HOUSE

        Item Qty. Approx Monetary Value(HK)
        Liquid laundry detergent & softener 30 sets $2100
        Facial box tissues 250 boxes $1000
        Toilet Rolls 30 packs $1200
        Garbage bags for house unit 51cmx51cm (white) (50 pcs/pack) 30 packs $750
        Trash bags for kitchen (black) (100 pcs/pack) 5 packs $650

        IN THE KITCHEN/Food Bank

        ItemQty.Approx Monetary Value(HK)
        Organic Sunflower Cooking Oil (500ml)

        30 bottles

        $2400
        Vegetarian Rice Noodles

        30 packs

        $1800
        Soup Packets30 packs$1280

        Organic Gummy Bears (25g x 10)

        30 packs$2100
        Organic Biscuits (400g)30 packs$1200
        Enviromental Friendly Dish Washing Detergent30 pcs$1800
        Saran Wrap / Ziploc Bag/ Aluminium foil/Butter paper30 pcs$1200

        Kitchen Supplies

        Sha Tin House

        Item
        Kitchen Scissors
        Kitchen Peelers for Carrots & Potatoes
        Extra Large Size Rubbish Bags (Heavy Duty)
        Kitchen Plastic Wrap with Easy Cutter (550 ft)
        Glad Aluminium Foil (75 ft)
        Cleaning Towels

        Kwon Tong House

        Item
        Kitchen Scissors
        Kitchen Peelers for Carrots & Potatoes
        Kitchen Plastic Wrap with Easy Cutter (550 ft)
        Glad Aluminium Foil (75 ft)
        Cleaning Towels

        Daily Supplies

        Sha Tin House

        Item
        Boxed Tissue Paper
        Toilet Rolls
        Alcohol Wipes
        Disinfecting Wipes
        Disinfectants or Antiseptic Liquid for Household Cleaning
        Dishwashing Detergent
        Kitchen Sponges
        Laundry Powder and Softener
        Medium Size Rubbish Bags

        Kwon Tong House

        Item
        Boxed Tissue Paper
        Toilet Rolls
        Disinfecting Wipes
        Jif Cleanser
        Kitchen Sponges (Non Scratch)
        Laundry Powder and Softener
        Rubbish Bags(51cmx51cm -white)
        Towel
        Saran Wrap / Ziploc Bag/ Aluminium foil

        Food Items

        Sha Tin House

        Item
        Cooking Oil 
        Dry Noodles or Pasta – Udon, Buckwheat Noodles, Rice Noodles, Macaroni
        Cereals–Corn Flakes, Oatmeal
        Supermarket Coupons

        Kwon Tong House

        Item
        Cooking Oil 
        Dry Noodles or Pasta – Udon, Buckwheat Noodles, Rice Noodles, Macaroni
        Cereals–Corn Flakes, Oatmeal
        Soup Packets
        Soda Crackers (Individually packed)
        Supermarket Coupons
        Eggs (10pcs./Pack)
        Fresh Fruits (weekly)

        Donor Contact Information

        Item Details

        Estimated Value *
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        Max. file size: 5 MB, Max. files: 5.

          For enquiries, please contact House Team through the information below:


          Tel: (+852) 2947 8778 (Office Hour: 09:00 - 18:30)
          Fax: (+852) 2947 8780
          Email: Kwun Tong House - [email protected]; Shatin House - [email protected]