My father is mostly the breadwinner of the family and is busy making a living all day long.
As the father of a child with rare diseases, Mr. Luo is no exception. However, after his son was born and diagnosed with a rare disease that is close to physical disability, Mr. Luo began to focus on his son.
Although his son unfortunately passed away 8 years ago, it did not make Mr. Luo depressed. On the contrary, because he accompanied his son for many years, he completely changed his outlook on life.
Over the years, volunteering in his spare time has become his habit. Later, he was engaged in the auto repair industry. He made good use of his profession to help a group of wheelchair users repair their wheelchairs for free. Recently, he also took an occupational therapy course, hoping to equip himself well. Day does everything in her power to help a child with the same rare disease as his son.
The 51-year-old Mr. Luo always likes to greet people with a smile, but there is a little-known experience hidden under his smile.
Mr. Luo, who is engaged in the auto repair industry, said that his education is not high. In the past, he and other people used to spend all their time running around for a living, and less time at home.
(Photo by Zhang Haowei)
The 51-year-old Mr. Luo always likes to greet people with a smile, but behind that smile hides a little-known experience.
Mr. Luo, who is engaged in the auto repair industry, said that his education is not high. In the past, he spent all his time running around to make a living and spending less time with his family, but all this was changed by the arrival of his son.
Mr. Law pointed out that shortly after his son was born, he was diagnosed with the rare disease Adams-Oliver Syndrome, congenital lack of scalp with abnormal reduction of limbs (Adams-Oliver Syndrome), which was the first case in Hong Kong at that time.
"In short, his condition is similar to limb weakness, with difficulty in moving his hands and feet, injuries to the top of his head, obstacles to brain growth, and cataracts in his eyes. The overall condition is relatively poor."
Mr. Law pointed out that shortly after his son was born, he was diagnosed with the rare disease Adams-Oliver Syndrome, congenital lack of scalp with abnormal reduction of limbs (Adams-Oliver Syndrome), which was the first case in Hong Kong at that time.
(Pictures provided by respondents)
At that time, the mother was taking care of the child full-time, while Mr. Luo took over after get off work.
Due to the lack of data on this rare disease, the family felt helpless.
Fortunately, the people around Mr. Luo were willing to help him at that time. "The church has a brother and sister association to help him, and the schools, therapists, and teachers in the neighborhood where Zaizai is studying have given him a lot of advice, so he can go in many directions."
However, under the influence of his illness, his son's condition deteriorated. By the age of 10, his condition was already extremely poor.
Knowing that his son's situation was irreversible, Mr. Luo decided to hold a birthday party for his son to leave good memories for him. It was this birthday party that changed his outlook on life.
Mr. Luo is still deeply impressed by the birthday party. At that time, there were balloon volunteers who arranged the birthday party venue. On the birthday party, the whole atmosphere was happy and not as heavy as he expected.
He thought the birthday would bring encouragement to his family and make everyone present happy.
Inspired to become a volunteer by holding a last birthday party for my son
About a year later, his son died of a serious illness.
Mr. Luo did not lose his mind because of this. On the contrary, he met the balloon volunteer who was assisting his son's birthday party, and learned from him, hoping to continue the positive force he felt. I want to help other people just like the people who helped Zaizai before.”
Until three years ago, he was looking for volunteer work online and found that the self-improvement association's electric wheelchair transfer program lacked maintenance masters. With his many years of experience in the auto repair industry, Mr. Luo came to the association to ask for help, "I saw a lot of people in the street at that time. For electric wheelchairs, I know that if I show up for the whole thing, there will be a fee, but the association provides free services, so I call and ask for help.”
Studying to become an occupational therapy assistant, hoping to help other children with rare diseases
Since then, Mr. Luo has become a maintenance master of the Self-improvement Association, and he spends one day a week helping the association.
At present, his main job is to assist the donated electric wheelchairs received by the association to inspect and refurbish second-hand wheelchairs, and sometimes also voluntarily perform repairs for other electric wheelchair users.
Mr. Luo is currently taking an occupational therapy course. He hopes that through what he has learned, he will become an occupational therapy assistant in the future. He hopes to have the opportunity to help children who have a similar situation with his son in the future.
Mr. Ting is a recipient of the Electric Wheelchair Transfer Scheme. In 2010, he fell from a height on the site due to an industrial accident, affecting his mobility.
Mr. Ding himself is an electric wheelchair user, but since last year, the wheelchair motor he used has started to have problems and needs to be replaced, but the cost is not cheap, and it has to spend more than 10,000 yuan.
For Mr. Ding, who has not worked for many years, it is an unaffordable amount. "At that time, it was actually broken a few times. I had to rely on my friends and neighbors to push me back to the house and repair it later, but I don't know when it will break down again." .
Later, he learned that the association has an electric wheelchair donation activity, so he planned to apply for another electric wheelchair, but he was unable to allocate a wheelchair suitable for him.
When Mr. Ding learned that the association has an electric wheelchair donation activity, he planned to apply for another electric wheelchair, but he was unable to allocate a wheelchair suitable for him.
(Photo by Zhang Haowei)
Electric wheelchair user donated: like getting a pair of feet back
Until New Year's Eve this year, his wheelchair broke down again, but it could not be repaired.
Mr. Ding originally thought that the whole New Year could only be spent in bed.
Later, I was informed by the association that suitable second-hand wheelchairs were available in time. "I felt so excited at the time, as if I had won the Mark Six Lottery, and I had regained a pair of feet. I could buy food, cook and take care of myself."
Mr. Ding recalled that the volunteer masters who assisted on that day did their best, "the night got a good night, and they helped them refit and adjust, because the wheelchair was not used as soon as it was received."
Cai Jiahui, a social worker of the Self-improvement Association, said that the Electric Wheelchair Donation Scheme started two years ago, aiming to help some non-CSSA, private funds that have not benefited from the market, and people in need of electric wheelchairs.
She said that most of the electric wheelchair users are accompanied by large and small diseases. If they are required to pay a huge amount of extra money to buy an electric wheelchair, the burden is heavy, and some may even be unable to pay for the maintenance costs.
Cai Jiahui pointed out that the association has always received second-hand electric wheelchairs, but not every wheelchair can be sent out completely. In many cases, they need to disassemble useful parts, or they can donate them to those in need after repairing and refurbishing.
Cai Jiahui revealed that there are more than 20 applicants, and most of them are in urgent need. Half of them have used old wheelchairs for more than seven years, and some of them are damaged and cannot be repaired.
She described that the models and models that different people need are limited, so waiting for a suitable wheelchair is not an easy task.
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