Name 姓名: Kayden Choo 朱家宝 Age 年龄: 1 Condition 病情: Baby Kayden has been diagnosed with Infantile Osteopetrosis since he was three months old. Now he urgently needs RM400K to undergo a bone marrow transplantation to save his life. 一名1岁小男婴于去年被发现患有婴儿型骨质石化 症 (Infantile Osteopetrosis), 急需40万令吉来进行骨髓移植手术，否则将会面对 眼盲耳聋，甚至是死亡的威胁。 Links: – Article: Nanyang Siang Pau – Donor List – How to Donate

11個月大的朱家寳于去年4月甫出世，是父親朱偉倫（25歲，理髮師）及楊偉燕（26歲，家庭主婦）的第一個愛情結晶品，不料的是他在出世3個月后，因被發現血細胞過少，而被判定患有嬰兒型骨質石化症，目前需長期在 馬大醫院接受治療。

嬰兒型骨質石化症 (infantile osteopetrosis)，病患通常於出生后不久即發病，一般是經由血液檢查異常來表現，例如：貧血、血小板低下、顆粒性細胞過少等症狀出現。且會因為神經的壓迫會造成病患視力障礙及聽障等情形；其他的病徵還包括骨折及感染等。屬於染色體隱性遺傳，多於十年內死亡。

而骨髓移植是唯一的治癒方式；主要是藉骨髓移植來替換失效的噬骨細胞，可望終止疾病的擴散。因此，馬大醫院建議小家寳前往梳邦再也醫藥中心接受骨髓移植手術，否則一旦病情加惡，小家寳刻會因此性命不保。

無奈的是，目前小家寳母親已懷孕7個月，因此已停工待產，而父親則為一名月入不到1500令吉的理髮師，兩人的經濟狀況十分不佳，根本沒有 辦法支付高達至少40万令吉的手術費。

Updates 24/4/2016

Kayden Choo had been discharged from the hospital last night. According to his father, his condition is a little more stable now. Although he is still unable to see clearly, he shows some response to sound. He is required to go to hospital 3 times a week for blood transfusion and medical check-up.

朱家宝的病情稍微恢复稳定。他的父亲朱伟伦说，小家宝的眼睛和脸部已消肿了，虽然眼睛仍然无法看到东西，但听觉开始对声音有一点反应。他说，小家宝已於昨日出院。现在，他需每个星期回去医院做3次，进行输血和复诊。

Updates 13/4/2016

Kayden Choo’s condition is unstable now. He is currently having vision and hearing
impairment. Let us continue to pray for him!

患上婴儿型骨质石化症(Infantile Osteopetrosis)的朱家宝，近日病情不稳定。他的父亲朱伟伦说，

小家宝的视力和听力都已出现缺损，且肝脾臓肿大。现在，小家宝的父母每天都在医院陪着他。让我们一起继续为他献上祝福！

Updates 8/4/2016

Kayden Choo is admitted to hospital again on 7th April due to virus infection. Let us pray for his speedy recovery!

患上婴儿型骨质石化症(Infantile Osteopetrosis)的朱家宝，因胸口导管处受细菌感染，导致他身体出现发烧、眼睛红肿、呼吸不顺和头部充血等症状。
医生已安排他於昨日（7/4）入院，并每天输入抗生素、血小板和红血球。医生说他必须留院大约2至3个星期。让我们一起祝福他早日康复！

Updates 30/10/2015

The doctor confirmed that the second lot of bone marrow cells has also not grown/engrafted. Kayden Choo is stable now but cannot leave the hospital because the present condition is “aplastic”, meaning he has no healthy bone marrow cells growing to support life. So every few days he will need platelet transfusion or blood transfusions.

The doctor is trying to search for another bone marrow donor for him urgently to allow him to try another transplant.

Up to now, his hospital bill is RM 246,399.00, Yayasan Nanyang Press hopes that the public will continue to support his medical expenses.

医生已证实朱家宝在第2次的骨髓移植后，他的身体仍无法制造健康的骨髓。虽然，他目前的健康状况尚算稳定，但还须留在医院，因为他每隔几天就须进行输血或注入血小板。

目前，医生正紧急为他物色另一名骨髓捐赠者，希望进行另一次的移植手术。

截至目前，他的医药费已累积至RM 246,399.00，随着接下来的治疗，预料他会需要筹更多的医药费。

《南洋报业基金》希望社会善心人士继续踊跃捐助，帮助这位勇敢的小生命。

Updates 18/10/2015

Kayden Choo received the second lot of stem cells after some preparative drugs were given. He will need another 2 to 3 weeks to see if there is any response. Meanwhile his liver problems have improved and he has used up to 8 or 9days of defibrotide. The doctor is holding another 11 bottles for him because there is possibility the liver problem will recur.

医生已为小家宝进行了第二次的干细胞移植，目前仍需2至3个星期的时间观察小家宝的进展。衷心希望这次会为大家带来好消息。

另一项值得高兴的是，之前因排斥导致小家宝患上肝臓小静脉闭塞症，在使用了大约9天的“Defibrotide”药物后，病情出现好转。

Updates 3/10/2015

On 29th Sept 2015, Kayden Choo received the second lot of stem cells after some preparative drugs were given. So praying that this will work and start to grow. He will need another 2 to 3 weeks to see if there is any response. Meanwhile his liver problems have improved and he has used up to 8 or 9days of defibrotide. The doctor is holding another 11 bottles for him because there is possibility the liver problem will recur.

If this transplant fails again, the problem is very bad.

在9月29日当天，医生为小家宝进行了第二次的干细胞移植，衷心希望这一次会为大家带来好消息，而医生也需要2至3个星期以观察小家宝的进展。另外一项值得高兴的是，之前因排斥而导致小家宝患上肝臓小静脉闭塞症，在使用了大约9天的“Defibrotide”药物后，病情出现好转。

Updates 1/10/2015

He is not doing well. On 18th Sept (26 days after infusion of bone marrow stem cells) we tested and found that none of the new stem cells have grown and so it is a state of “Non-engraftment”. Meanwhile he has developed a complication called VOD (veno-occlusive disease) of the liver and the doctor has to use a drug called Defibrotide which is very expensive, which he has to borrow from other hospitals and quickly try to import some into his hospital. The cost of Defibrotide per day is RM2000/ roughly and he may need to use it for 2 to 3 weeks.

Meanwhile the doctor is hoping that the liver will improve. Once there is improvement in the liver, the doctor plans to give him a bit more drugs/conditioning and infuse the second lot of stem cells and hope that there is engraftment. Otherwise the overall outcome will be bad.

朱家宝在八月杪完成骨髓干细胞移植手术至今，医生发现小家宝的干细胞并无活跃的迹象。然而更令人担忧的是，主治医生发现小家宝的身体出现排斥而患上肝臓小静脉闭塞症（VOD）。

为抢救小家宝，医生不得不使用一种名为“Defibrotide”的药物。而此药物的价格非常昂贵，医生估计小家宝每天使用此药物的费用高达约2000令吉的药物，长达2至3个星期。

Updates 13/8/2015

Kayden was admitted to hospital yesterday to have his central venous catheter inserted. The actual date of bone marrow transplant is scheduled on 25th August. Doctors will start preparing his body by giving him chemotherapy from 17th August onwards. Hence he is expected to be hospitalised from today onwards for the next 2 to 3 months.

小家宝于昨日就入院以在身上植入化疗管

据南洋报业基金向小家宝的主治医生了解，小家宝的骨髓移植手术是于本月25日进行。然而在这之前，医生得为小家宝进行一系列的化疗，以确保他的身体状况能处于最佳状态。

另外，医生也预计接下来的2至3月，小家宝都得在医院病房内渡过。

Updates 6/8/2015

Kayden Choo, a 1-year-old boy diagnosed with Infantile Osteopetrosis, will be admitted to hospital on 7 August 2015 for the insertion of his central venous line and then admission later for the proper transplant on 25th August 2015.

患上婴儿型骨质石化症 (Infantile Osteopetrosis)的朱家宝 (1岁) 将于8月7日入院进行手术植入中心静脉导管，并于8月25日进行骨髓移植手术。

Updates 15/4/2015

不幸患上婴儿型骨质石化 症 (Infantile Osteopetrosis)的朱家宝，目前正在吉隆坡马大医院接受观察。一般上，患上此症的孩子，体内都无法自行制造充足的血细胞，若未及时接受治疗，患者将会面对 眼盲耳聋，甚至是死亡的威胁。

目前唯一能医治朱家宝的方式就是进行骨髓移植手术，而SJMC是唯一一间有提供此项医疗服务的医院。该医院的医疗人员已将朱家宝的血液样本送到美国进行检验组织配对，同时也已跟台湾慈济合作，值得一提的是，台湾当地已有29名人士的骨髓是可能与朱家宝的骨髓相配，一切仍待远方的检验结果。

接下来，院方需在众多骨髓捐赠者中进行一系列的组织配对，以为朱家宝找出最合适的骨髓，而每次检验的费用是450美金。

南洋报业基金已协助缴付组织配对检验的费用，让该检验能在近期内进行，避免拖延朱家宝的病情，同时也诚心希望适合的骨髓捐赠者能及时出现，让朱家宝不再饱受病魔的折腾。

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