 |
| 中文 |
Every parent desires to see their child grow up healthy.
However, if the child suffers from serious blood disease such as inborn thalassemia major, then lifelong treatments, monthly blood transfusions and daily iron chelation therapy (8 hours treatment per day to remove the excess iron resulting from regular blood transfusions) will be their fate. A bone marrow transplant can be a cure for patients with diseases as such, but the chance in finding a right match is scarce. An abundant and resourceful Bone Marrow Donor Registry would shed lights of hope for these patients in despair.
Further expanding the registry can increase the chance of successful matches and save more lives. We hope to raise HK$3.7 million for the expansion of the registry, as well as to support various humanitarian services in lack of resources at the Hong Kong Red Cross. Your help is important; kindly response to our call. |
| 03 Apr 2014 |
Dear Red Cross Supporters, |
Did you know each year in Hong Kong, nearly 1,200 people suffer from severe blood-related diseases and urgently needed bone marrow transplants? The establishment of Hong Kong Bone Marrow Donor Registry is precisely the perseverance to locate suitable bone marrow to help these patients to regain a healthy life. Each registered donor profile is more than just a record; it is a beacon of hope to the patients and their families. We are actively looking for suitable volunteer bone marrow donors for the patients with hopes. Each headcount increase in the registry, each test ran for matches, would yield a better chance for recovery.
However all blood samples collected from potential donors will need to go through tests before it can be logged in the Registry. Your kind gift of HK$500, HK$800 or even HK$1,000 to sponsor these blood tests can help us raise hope for countless thalassemia and blood-disease patients. Please support!
Now, let’s meet 5 year-old Tse Chi-wai (Wai-wai) with thalassemia major, whose life has completely changed through the help of the Hong Kong Bone Marrow Donor Registry. Wai-wai was born with severe alpha (α) thalassemia. Luckily, she found a matching donor and successfully completed her bone marrow transplant four years ago. Last month, with the arrangement by the Hong Kong Red Cross Blood Transfusion Service, Wai-wai finally had the chance to meet her donor, Wilson, whom she now considers her “blood-brother”. |
Thalassemia Major patients needs monthly blood transfusion to sustain their lives.
5 year-old Wai-wai has completed her bone marrow transplant and will start primary school this year. |
A life of endless treatment |
Wai-wai, who was born with Thalassemia major, had found her match through the Hong Kong Bone Marrow Donor Registry. They are finally meeting for the first time.
Wai-wai after the completion of the bone marrow transplant was happy and lively. |
Wai-wai, now a K3 student, met her donor Wilson, an accountant, that day with her father Mr. Tse. When asked what they wished for Wai-wai, Mr. Tse and Wilson said the same, “I just wish Wai-wai grows up healthy and strong.”
Back in 2008, when the Tse family was happily preparing to welcome their newest member, only to discover that their baby in womb was diagnosed with severe alpha (α) thalassemia.1
Even through their distress, Mr. and Mrs. Tse tried everything they could to support their daughter. They sought medical advices from every doctor they came across. Mr. Tse even quitted his job in the Mainland to be close with his wife and daughter to fight the battle against this horrifying disease together.
At last, Wai-wai arrived to the world safely, but marked the beginning of another agonising challenge for Mr. and Mrs. Tse. “Wai-wai started having blood transfusions even when she was still inside her mother’s womb. After she was born, blood transfusions became a monthly treatment she had to endure. At 7 or 8 months old, Wai-wai would cry whenever we got close to the hospital. She knew the pain of injections was waiting for her.” Recalling how his daughter had suffered, Mr. Tse could not suppress the tears forming in his eyes, “This hurt even more than having the injections myself.”
Wai-wai was suffering from thalassemia major, also known as Cooley's anemia, a severe form of hereditary blood disease, which means that the body cannot produce sufficient amount of healthy red blood cells for normal body function. Patients with this disease often times are bounded with lifelong treatments including blood transfusions and medications, unless they can find the right match of bone marrow for transplant. |
|
1Fast Fact: Thalassemia
Thalassemia is a genetic blood disease. Patients suffer from hemoglobin (Hgb) deficiency in their red blood cells, which means oxygen cannot be carried to different parts of the body effectively. There are 2 common types of thalassemia: alpha (α) and beta (β) thalassemia, which are determined by genetic factors. Alpha (α) is a more severe type of thalassemia. About 5% of Hong Kong’s population carries the alpha (α) thalassemia gene. Since most alpha (α) thalassemia patients are deceased even before or soon after they are born, there are only a handful of alpha (α) thalassemia patients around the world. |
|
The priceless gift of a matching donation
Through the help of the Hong Kong Bone Marrow Donor Registry, Wai-wai’s hope of a bone marrow transplant was realised.
Wilson, a humble and polite man under his glasses has all the traits of a big brother. Over 10 years ago, this big brother learnt about a bone marrow donor recruitment drive in Sha Tin. He decided to pay a visit and took the blood test thinking he could “take this as a chance to shop in Sha Tin.” At the time, he had absolutely no idea that this casual decision would be of a great significance in a young girl’s life.
Over a decade has passed, Wilson has almost forgotten about the drive, until one day he got a phone call and was told that he was a right match for a young child with severe alpha (α) thalassemia.
During his briefing session, Wilson learnt that the procedure of bone marrow donation2 does not cause any serious nerve damages and the recovery process is quite quick. He chose the peripheral blood stem cell donation procedure and accepted a total of seven granulocyte colony stimulating factor (G-CSF) injections during the three days prior to the procedure. Wilson generously donated a bag of haematopoietic stem cells (HSC). Recalling the process of the bone marrow donation, he humbly emphasised that this was the least he could do, “I’m glad that I could help. It’s meaningful. Thanks to the Hong Kong Red Cross, donors and patients can find each other.” |
Wai-wai in recovery with her parents. |
2Fast Fact: Types of Bone Marrow Donations
There are two types of bone marrow donation procedures in practice: the traditional bone marrow donation and the peripheral blood stem cell donation. A traditional bone marrow donation involves the extraction of a small amount of healthy haematopoietic stem cells (HSC) from the donor's bones (usually the pelvis) under general anaesthesia and storing it in a marrow bag for subsequent administration to the recipient in a process similar to blood transfusion. Bone marrow is a type of tissue completely different from the spine, nervous system, or spinal fluid, so bone marrow donation will not lead to any serious neurological damage.
Peripheral blood stem cell donation involves separating HSC from a donor’s blood through a special blood processing machine called an apheresis machine. Under normal conditions, HSC are present at very low amounts in the blood. The doctor will administer an injection called granulocyte colony stimulating factor (G-CSF) to mobilise HSC from the bone marrow into the donor’s blood. The donation process involves inserting a tube into a vein in one arm, passing donor’s blood through a special machine that separates and collects the stem cells, and returning the remaining blood contents (such as red blood cells, white blood cells, platelets and certain plasma) through a vein in the other arm. Generally, the donor needs to give around 250cc blood. Collection can be done without general anaesthesia and lasts 3 to 4 hours. |
|
Connected by blood and kindness |
Wai-wai’s cheerful personality touched Wilson’s heart. They bonded immediately.
During the meeting session, Wai-wai kept on kissing Wilson, it seems as though she felt the special connection between them. |
Before meeting Wai-wai, Wilson seemed a bit nervous. A big smile spread across his face as soon as Wai-wai showed up strong and healthy. It’s been four years since the “blood siblings” had the chance to meet each other.
Wai-wai recovered well after the transplant and was leading a healthy life that is now virtually free of injections and medications. Worried that Wai-wai might be shy and nervous about the meeting, Wilson had bought a big plush doll for her as present. It turned out Wai-wai was quite different from what Wilson had expected. During the meeting, Wai-wai always wore an adorable smile and kept kissing and hugging this big brother, just like a real blood relative.
The transplant bonded Wilson and Wai-wai by blood. After the transplant, Wai-wai’s blood type turned from O to B, the same as Wilson. Mr. Tse hoped that Wai-wai would also share some of Wilson’s positive traits and develop a big heart to support other young patients.
Like any other normal girl, Wai-wai was cheerful and animated in front of the camera, making different expressions, often with a V-sign. Thanks to Wilson, this 5-year-old girl no longer needs to endure monthly blood transfusions and averted lifelong iron chelation therapy3. Wai-wai still needs to visit the hospital occasionally. Every time she takes a blood test, Mr. Tse’s heart clenches. And every time, Wai-wai, whose ambition is to be a nurse, gives him a smile and says, “Pat my arms. Then it won’t hurt.”
Wai-wai, Mr. Tse and Mrs. Tse are all very grateful to Wilson’s selfless donation. As Mr. Tse said, Wai-wai was lucky to have found Wilson, since looking for a matching donor was not easy. |
|
3Fast Fact: Iron Chelation Therapy
Due to repeated blood transfusions, patients with severe thalassemia will get iron overload symptoms. After the transfused red blood cells are dissolved, the iron within fails to reproduce the cells as normal and accumulate in the body. The excessive iron can cause damages to the liver, heart and other parts of the body. Most patients would die before the age of 20 unless proper iron chelation therapy is undertaken. The therapy is a lifelong treatment that requires patients to take subcutaneous infusions for over 8 hours a day, 5 to 7 nights a week to remove the excessive iron. |
|
Open your heart and raise hope
The most difficult part of a bone marrow transplant is matching both the donor’s and recipient’s tissue types (also known as “human leukocyte antigen” (HLA) 4). There are 5 pairs of tissue types in the human body. A qualified donor should have at least 4 pairs of tissue types matching the patient. The chance of finding a 4-pair match in an unrelated donor is only 1 in 5,000 to 10,000, while the chance of a 5-pair perfect match is even more infinitesimal. Wai-wai and Wilson were one of the lucky perfect cases. A perfect match of tissue types helps minimise the risk of transplant rejection. After the transplant, Wai-wai had only suffered from mild rejection symptoms, including rash and nausea, temporarily. Every new bone marrow test increases the chance of ending a thalassemia patient’s suffering. Please help us expand the registry of available donors and create more successful matches by contributing HK$500, HK$800 or HK$1,000.
The success rate of a bone marrow transplant varies from 20% to 70%, depending on the age, severity of the disease and condition of the patients during the treatments. Wai-wai had the transplant when she was around 1 year-old, which was the “golden age period” for the therapy as young patients generally have a higher chance of recovery. Also, with the brain memory systems not yet fully developed at this age, Wai-wai would perhaps forget about the monthly blood transfusions and daily medications she had to endure from thalassemia. By the time the treatment was completed, Wai-wai was three and just about ready to start kindergarten like every other healthy child.
Wai-wai was very lucky. Her luck came from Wilson’s selfless donation, the professional support of medical staffs, other kind-hearted potential bone marrow donors and all our generous supporters. All together, they build a foundation of hope, the Hong Kong Bone Marrow Donor Registry, for Wai-wai and other patients with severe blood diseases. |
Wai-wai only had some minor reactions after the bone marrow transplant. However, due to the side effects from drugs post operation, her face was swollened and her hair grew thicker. |
4Fast Fact: Human Leukocyte Antigen (HLA)
Red blood cells are grouped into types A, B, AB and O. As for white blood cells, they also have tissue types mainly classified into 8 groups, including A, B, C and DR. Each group has a large number of antigens resulting in thousands of different possible tissue types for white blood cells. |
 
After the transplant and treatments, Wai-wai is no different from any other children. At the age of 3, she is able to start kindergarten healthy. |
The Hong Kong Bone Marrow Donor Registry receives approximately 600 local and overseas cases looking for unrelated matching donors each year. The chance for a successful match is about 1 in 5,000 to 10,000. Your support can help us raise the odds for thalassemia patients and give hope.
Right now, there is over 96,000 potential donors registered in the Hong Kong Bone Marrow Donor Registry, offering hope to patients like Wai-wai. We plan to increase 5,000 donor profiles every year and to maintain a total of 100,000 or above active donor profiles. In order to do so, we need more bone marrow donors as well as financial contributions from generous supporter like you.
It costs HK$600 for each blood test each time to verify the profile of a potential bone marrow donor. Besides recruiting donors, the Hong Kong Bone Marrow Donor Registry is also responsible for clinical tests, matching and verifying bone marrow as well as communications with overseas registries, carrying out donation procedures and promoting bone marrow donations. Your generous contributions can help the maintenance and expansion of the registry to help more patients and their family. We urge your immediate support through a one-ff donation of HK$500, HK$800 or even HK$1,000 now. Please click here to donate or download the donation form. Your generosity can also help us enhance the accuracy of the existing HLA test and benefit more patients like Wai-wai. Proceeds will also be used for other local and overseas humanitarian services supported by the Red Cross like blood education, disaster relief and caring for singleton elderly.
Before signing off, I would like to express my sincerest gratitude once again to all your kind support. For inquiries and suggestions regarding donations or other matters, please feel free to contact us via secretarygeneral@redcross.org.hk or at 2802 0016.
Wishing you health and happiness!
KM Chan
Secretary General
Hong Kong Red Cross |
|
|
|
| © Copyright 2014 Hong Kong Red Cross. All rights reserved.
|
|
|