【Hong Kong G6PD Deficiency Children's Foundation Limited】
The Hong Kong Broadbean Diseases Children's Fund is the first non-profit organization in Hong Kong to provide support services for children with G6PD Deficiency and their families. It was organized by Ms. Ho Ying Yee (B Gama) and several parents in November 2017. It was formally established on March 8, 2018 and is now applying to become a Hong Kong government accredited registered charity. The purpose of this association is to provide support for the "G6PD Deficiency " family and unite the Hong Kong G6PD Deficiency family. Create an information platform in both English and Chinese to provide information on G6PD Deficiency and a list of foods and daily necessities that can be safely used. Through regular activities and education seminars, the public is informed about the correct knowledge of "bean disease" and the public is informed about the support and understanding of patients with G6PD Deficiency and their families. At the same time, R & D provides "safe use / use of G6PD Deficiency patients" label to product agents and manufacturers to mark their products for safe use by patients.
A few years ago, when I was unprepared, I learned that my newly born son was suffering from "bean disease," and my mind was blank. I was completely unprepared to see what happened next. After that, I frantically searched the Internet for information on faba bean disease, and learned that when exposed to external stimuli, such as broad beans, camphor, or serious infections, red blood cells would be destroyed and dissolved, causing acute hemolysis, jaundice, and brain damage. It may even cause other complications. Severe people may even die. The family members of the Million and Ten Thousand Years should no longer use "Faba bean bans." Unfortunately, the elders at home do not think that they have used medicinal oil. As a result, his son became ill and was immediately sent to the hospital for treatment. Now he continues to pray "Thousands of priests are doing well." Although the final hemolysis situation is only minor, it still has a lingering fear.
Since then, I treated my son's food supplies with prudence and discretion. It was almost impossible to say what was lost. But what made me most guilty was because I was a genetic carrier and passed her on to her son. "Faba bean disease" is the most common metabolic disease in Hong Kong. Although there are many patients, the general public is not aware of "bean disease" and even misunderstands it as an infectious disease. This makes me very sad. Because patients with faba bean disease can avoid hemolytic substances for the rest of their lives, they are no different from ordinary people. The
If more people in the community care about understanding faba bean patients and their families, do not discriminate against them...
If you use medicinal oils in public places, think about patients with faba bean diseases that may have special needs around you...
If every kind of food or product can be marked with "safe use/use of faba bean" or "ban of faba bean"...
If the novice mom can get more informational and emotional support, she can safely spend a depressed period of rest, a worrying newborn baby's jaundice period...
With this belief, I established the "Hong Kong Broadbean Disease Children's Fund."
November 1, 2017
As the organization prepares for the establishment of foundations, there are many issues to be solved. Therefore, professionals are responsible for the registration and establishment of foundations. They devote all their efforts to referencing the registration cases of foundations that are well-known in Hong Kong. There was a misunderstanding among them. The wording of the foundation name was different from the original meaning of the foundation. Fortunately, it was discovered in time and the name "Hong Kong Broadbean Disease Children's Fund" was changed.