TVB 星期日檔案｜我兒確診罕見病｜ 無線新聞 TVB News

Summary

The script narrates the struggles and resilience of families with children affected by Duchenne Muscular Dystrophy (DMD), a rare and currently incurable muscle-wasting disease. It details the emotional journey of diagnosis, the physical challenges faced by the children, and the supportive measures taken by families and communities. The story highlights the importance of physical therapy, education, and a positive outlook, as well as the formation of a patient organization to provide mutual support and advocate for better resources.

Takeaways

• 😔 The script discusses a rare genetic disorder with a low incidence rate of one in five thousand, causing muscle atrophy and currently no cure available.
• 📜 Upon diagnosis, the shock and despair of the parents are profound, especially when realizing the severity and progression of the disease for their children.
• 🔍 The parents turn to the internet for information, only to find the lack of treatment options and the grim prognosis, which adds to their emotional turmoil.
• 🚶‍♂️ The disease primarily affects males, with a prevalence of one in every 3500 to 5000 newborn boys, but there are rare cases in females as well.
• 👣 The progression of the disease includes difficulty in climbing stairs, frequent falls, and clumsiness in running and jumping, eventually leading to a loss of mobility.
• 💔 The most severe impact is on the heart muscle, where heart failure can lead to sudden death, which is a significant cause of mortality for these patients.
• 🏥 Current treatments are limited to steroids and physical therapy, which can slow down the rate of muscle degeneration but do not provide a cure.
• 👨‍👩‍👧‍👦 The emotional journey of the parents is complex, involving feelings of guilt, acceptance, and the need to adjust to the reality of their child's condition.
• 🏫 The children with the disease are often enrolled in special schools that provide physical, occupational, and speech therapy to help them maintain their abilities for as long as possible.
• 👦 The script features a 22-year-old patient named Le Tian, who, despite his diagnosis at a young age and the rapid progression of his disease, has managed to attend university and maintain a positive outlook.
• 👨‍👩‍👧‍👦 The family dynamics are highlighted, showing the support and care provided by parents, siblings, and the community to ensure the best possible quality of life for the affected children.
• 🏊‍♀️ The importance of physical activity, such as swimming, is emphasized as a means to delay muscle degeneration and maintain the patients' physical abilities.
• 🤝 The formation of a patient organization is described, which aims to provide support and advocacy for families affected by the disease, showing the power of community and shared experiences.

Q & A

什么是罕见病？

罕见病是一类患病率非常低的疾病，世界卫生组织将罕见病定义为患病人数占总人口的0.065%~0.1%之间的疾病或病变。全球已知的罕见病超过7000种，其中约80%是由于遗传缺陷所导致。在中国，罕见病的患病人数约为2000万。

罕见病患者在中国的现状如何？

中国目前约有2000万罕见病患者，每年新增患者约20万。他们面临着诊断难、治疗难、用药难的三大难题。但近年来，中国政府积极推进三级预防策略防治出生缺陷，健全出生缺陷防治网络，并通过政策支持和医保目录调整，提高了罕见病用药的可及性和可负担性。

什么是杜兴氏肌肉营养不良症？

杜兴氏肌肉营养不良症是一种遗传性肌肉疾病，患者天生肌肉细胞缺乏一种酵素，导致肌肉无法正常运作。这种疾病主要影响男性，每3500至5000名初生男婴中就有一名受到影响。患者会逐渐失去行动能力，并且心脏肌肉也会受到影响，可能导致心力衰竭。目前尚无法根治，但通过类固醇和物理治疗可以减缓肌肉退化速度。

罕见病患者家庭面临哪些挑战？

罕见病患者家庭面临的挑战包括应对疾病带来的身体和情感压力、寻找和负担治疗费用、处理日常生活中的特殊需求，以及应对社会对罕见病的误解和歧视。家庭成员需要投入大量时间和精力来照顾患者，同时还要努力维持正常的生活和工作。

如何支持罕见病患者和他们的家庭？

可以通过多种方式支持罕见病患者和他们的家庭，包括提供情感支持、帮助他们获取医疗资源和信息、参与和支持罕见病相关的慈善活动和组织、推动社会对罕见病的认识和理解，以及倡导政策层面的改变，以改善罕见病患者的生活质量和治疗条件。

中国政府在罕见病治疗方面采取了哪些措施？

中国政府在罕见病治疗方面采取了多项措施，包括将一些罕见病药品纳入医保目录，降低患者的经济负担；建立全国罕见病诊疗协作网，提高罕见病的诊断和治疗能力；支持罕见病药物的研发和创新，提高药品供应保障；以及开展健康教育和预防工作，减少罕见病的发生。

罕见病患者的寿命如何？

罕见病患者的寿命因疾病类型和治疗条件而异。一些罕见病患者在得到及时和适当的治疗后，寿命可以接近正常人群。然而，有些罕见病由于缺乏有效的治疗方法，可能会影响患者的预期寿命。例如，杜兴氏肌肉营养不良症患者在接受治疗后，寿命有所延长，但仍然较短。

罕见病患者在教育方面有哪些特殊需求？

罕见病患者在教育方面可能需要特殊的支持和适应，包括个性化的学习计划、辅助工具和设备、以及对教师和同学的疾病教育。学校可能需要为这些学生提供特殊的教育资源和支持服务，以确保他们能够平等地接受教育。

罕见病患者如何进行日常活动和自理？

罕见病患者在进行日常活动和自理方面可能需要特殊的辅助工具和设备，以及家人或专业护理人员的协助。职业治疗师可以帮助患者训练生活自理能力，并设计或推荐适合的辅助用具。患者和家人也需要学会乐观面对生活，寻找适应自己能力的方法来完成日常活动。

罕见病患者的心理状态如何？

罕见病患者可能会经历各种心理挑战，包括对疾病和未来的恐惧、对自身能力的限制感到沮丧、以及对社交活动的限制感到孤独。家庭成员和医疗专业人员的支持对患者的心理健康至关重要，帮助他们建立自信，积极面对生活。

Outlines

00:00

😢 Facing Duchenne Muscular Dystrophy

This paragraph introduces the emotional and physical challenges faced by parents whose children are diagnosed with Duchenne Muscular Dystrophy (DMD), a rare and currently incurable muscle-wasting disease. The script describes the shock and despair parents experience upon learning about the condition, the search for information that only intensifies their fear, and the inevitable progression of the disease that leads to wheelchair dependency and life-threatening complications. It also presents the story of 10-year-old Zhiqiao, who, despite her diagnosis, appears no different from other children but struggles with muscle weakness, particularly in her lower limbs, requiring constant support and special attention during physical activities.

05:00

🤔 Navigating Life with DMD

The second paragraph delves into the daily struggles and the coping mechanisms of families living with DMD. It highlights the decision of Zhiqiao's parents to enroll her in a special school to cater to her physical needs and the importance of physical therapy in slowing down muscle degeneration. The narrative also introduces another DMD patient, Le Tian, who, despite his severe condition, has managed to achieve milestones like attending university, thanks to the support from his mother and the determination to live life to the fullest. The paragraph underscores the importance of maintaining a positive outlook and the role of the family in providing emotional and physical support.

10:01

👨‍👩‍👧‍👦 Family Support and Adaptation

This section focuses on the family's efforts to adapt to and support their daughter Zhiqiao, who is affected by DMD. It discusses the parents' acceptance of her condition and the practical steps they take to ensure her well-being, including transferring her to a special school that offers comprehensive rehabilitation and training. The paragraph also touches on the importance of maintaining a normal life for Zhiqiao, such as doing homework and participating in family activities, and the parents' hope that these experiences will empower her to face future challenges.

15:02

🏊‍♀️ Embracing Physical Activity and Community

The fourth paragraph emphasizes the significance of physical activity in managing the symptoms of DMD, as exemplified by Zhiqiao's swimming practice. It also discusses the formation of a patient organization by the parents to support each other and share experiences, which has been a source of strength and hope for the families involved. The narrative illustrates the community's collective desire to improve the quality of life for their children and to advocate for better resources and support.

20:03

👨‍👩‍👧‍👦 Together in Hope and Resilience

The final paragraph brings the family's journey full circle, highlighting their unity and shared hope for the future despite the challenges posed by DMD. It portrays the family's commitment to continue supporting their daughter in all aspects of life and their optimism that medical advancements may one day offer a solution. The story concludes with a message of resilience and the power of community in facing adversity together.

Keywords

💡Incidence Rate

The incidence rate refers to the number of new cases of a disease in a given time period. In the video, it is mentioned that the incidence rate of the disease is one in five thousand, indicating its rarity. This is crucial for understanding the theme of the video, which revolves around the challenges faced by families dealing with rare diseases.

💡Muscular Atrophy

Muscular atrophy is a condition characterized by the wasting away of muscle mass, often due to diseases or conditions that impair nerve function. The script describes patients with this condition, highlighting the central theme of the video, which is the impact of such a disease on individuals and their families.

💡Duchenne Muscular Dystrophy (DMD)

Duchenne Muscular Dystrophy is a specific type of muscular atrophy, predominantly affecting young boys, where the muscles become progressively weaker due to a lack of a protein called dystrophin. The video script discusses this condition, emphasizing its severity and the lack of a cure, which is central to the narrative of the challenges faced by the patients and their families.

💡Physical Therapy

Physical therapy is a method of treatment that involves exercises, stretches, and massages to help maintain, restore, or improve movement and function. The script mentions the role of physical therapy in slowing down the muscle degeneration in patients with DMD, illustrating the importance of such treatments in managing the disease.

💡Steroid Medication

Steroid medication, in the context of the video, refers to the use of drugs like corticosteroids to manage the symptoms of DMD and slow the progression of the disease. The script discusses the use of such medication, indicating the medical interventions available to patients with this condition.

💡Special Education

Special education is tailored teaching for students with unique learning needs, often due to physical or cognitive disabilities. The video script mentions the transfer of a child to a special school to accommodate her needs, reflecting the theme of adapting educational environments to support children with disabilities.

💡Life Expectancy

Life expectancy is the average number of years a person is expected to live, influenced by factors such as health and lifestyle. The script discusses the life expectancy of individuals with DMD, noting that while it has increased due to medical advancements, it is still significantly lower than average, underscoring the severity of the disease.

💡Coping Mechanisms

Coping mechanisms are strategies used to manage stress or adversity. The video script highlights how families cope with the challenges of having a child with a rare disease, including seeking support from others in similar situations, which is a key aspect of the narrative.

💡Muscle Degeneration

Muscle degeneration refers to the gradual decline in muscle function and mass. The script describes the progression of muscle degeneration in DMD patients, which is a central theme of the video as it illustrates the physical decline experienced by the patients.

💡Support Groups

Support groups are communities of individuals who share common experiences or challenges and offer mutual aid and advice. The video script mentions the formation of a support group for families with children affected by DMD, showing the importance of community in dealing with rare diseases.

💡Adaptation

Adaptation in this context refers to the process of adjusting to new conditions or ways of living. The script discusses how families adapt to the needs of a child with DMD, including changes in daily routines and activities, which is a key theme in the video showing the resilience and resourcefulness of these families.

Highlights

A rare disease with an incidence rate of only one in five thousand causes muscle atrophy and currently has no cure.

The emotional impact of receiving a diagnosis for this incurable disease can leave individuals in shock.

The challenge of supporting children with the disease as their condition deteriorates, including the eventual need for wheelchairs.

The hope to delay the progression of the disease to maintain some mobility for the affected.

The rarity of the disease among females, with only a few cases like that of 10-year-old Zhiqiao.

The physical challenges faced by Zhiqiao, such as the difficulty in climbing and the need for support.

The late diagnosis of the disease, often between the ages of 3 to 6, with initial symptoms including difficulty with stairs and an increased likelihood of falling.

The impact of the disease on the heart muscle, which can lead to sudden death due to heart failure.

The current medical approach to slow down the disease progression with steroids and physical therapy.

The emotional struggle of parents, such as the guilt and fear of the child's early death.

The importance of social support and the establishment of a patient organization for mutual support.

The educational challenges and the need for special schooling to accommodate the physical limitations of the disease.

The role of occupational therapy in helping patients maintain self-care abilities despite physical constraints.

The personal story of Le Tian, a 22-year-old patient who has overcome numerous health crises and achieved his dream of attending university.

The psychological impact on patients, including the fear of the future and the struggle with self-worth.

The family's efforts to create positive memories and support the emotional well-being of their daughter.

The physical therapy and exercise regimen, such as swimming, to delay muscle degeneration.

The community's response to the establishment of the patient organization and the collective hope for future medical advancements.

Transcripts

病發率只有五千分之一

患者肌肉萎縮

無藥可醫

但偏偏他們的子女患有此病

拿報告的一刻

整個人完全傻掉

這個病是否絕症？

嘗試上網搜尋資料

嘩！沒有搜尋還好

查看資料的一刻

連哭都不懂哭了

為甚麼會這樣？

未來如何陪伴子女面對病情惡化

是一大挑戰

他們需要坐輪椅

這是預計會發生的

不過仍然有一個想法

希望稍為延遲

或者她不會完全失去行動能力

可以有些活動能力也好

但上肢肌力也是弱的

不一樣的家庭生活

到底為罕見病童家長

帶來甚麼啟示

大家一起同行

很多時大家會將不開心

消極的事

把它變成能力積極面對

10歲的芷翹

表面看來與其他小朋友沒有分別

但她下肢肌肉能力比較弱

很多時要人在身邊扶持

芷翹的手部肌肉能力還好

但她攀爬的時候

需要用腳協調

其實是困難的

一般小朋友過木橋很快

但由於她下肢能力較弱

變相她本身已經容易跌倒

下肢需要用力的位置

便更需要他人幫忙

在芷翹6歲的時候

物理治療師發現

她有身體發展遲緩

父母帶她做過很多檢查

但都找不出原因

直到兩年多前

她確診患上了罕見病

「杜興氏肌肉營養不良症」

醫生說這個罕見病的患者

天生肌肉細胞缺乏一種酵素

令肌肉無法正常運作

它主要影響男性

每3500至5000名的

初生男嬰之中

就有一名受到影響

芷翹作為女性

是極少數發病例子

日後將會同男性患者一樣

沒有辦法行路

很多時候他們發病的歲數

是在3歲至6歲

第一是上下樓梯有困難

第二是會比較容易無故跌倒

第三是跑跳會比較笨拙

然後到接近青春期時

明顯會感到很吃力

很快便失去行動能力

他們的手部能力

亦會越來越差

另一方面

最嚴重的是心臟肌肉亦受影響

當心臟衰竭慢慢變得嚴重時

很多時候都成為他們忽然死亡

其中一個重要的原因

陳凱珊研究兒童神經肌肉疾病多年

她說這個病暫時無法根治

只可以靠類固醇和物理治療

減慢肌肉退化速度

從外國經驗來看

他們的壽命是延長了

有近30歲壽命

雖說壽命比以前長

但其實也是較短命

隨著年紀

其實他整個身體

很多地方的肌肉會受影響

子女患上罕見病

父母難免深受打擊

對家進與秋薇兩夫婦來說

最難接受是芷翹

可能比自己更早離世

覺得「啊！你跟我說甚麼呢？」

你跟我說：「她患病了」

原來她到12歲便要坐輪椅

原來她可能比我們更早離世

是真的需要一段時間

調整自己心態

腦海不斷在想

是啊！她會比我更早離世

那之後怎麼辦呢

我甚至有責怪自己

太太秋薇不知道的

怪自己當初是否不應讓她出生

但有時候不能計算太多

妹妹，巴士還有多少分鐘到達

36分鐘

36分鐘？我們還有充足時間

家人要接受芷翹這個病

需要時間

往後怎樣照顧

是更大的挑戰

考慮女兒肌肉發展

遠遠落後於同齡小朋友

父母在兩年前

幫她轉讀特殊學校

每朝要搭兩程巴士跨區返學

路途遙遠

但芷翹媽媽認為

轉校對女兒的身體狀況有好處

這個病在身體上會慢慢惡化

無論是上體育課

她都不能做到一般小朋友

做到的事情

但轉讀這間肢體殘障學校

他們舉辦很多不同的活動

在復康上有些訓練

有職業治療、言語治療

亦有物理治療

所以包含了全部復康訓練

我問芷翹

今天你想要紅色還是黃色？

黃色

芷翹每星期都會接受不同治療

重點訓練各組肌肉能力

如果她不再多點活動

她本身還有的能力

她的退化可能會加快

最糟糕的情況

她可能連吃飯也做不到

你看到床鋪很亂

麻煩幫忙收拾床鋪

職業治療師鄭月雯指

課堂會同時幫助患者

訓練生活自理能力

她做不到某些普通自理

我們便會構想

有沒有輔助用具可以幫助她

例如剪指甲

我們要找些相對性指甲鉗

再因應她還有甚麼機能可以做到

令他們明白雖然身體有限制

但其實自己可以做到很多事

樂天今年22歲

也是「杜興氏肌肉營養不良症」的

罕見病患者

他在6歲確診

入讀特殊學校

接受過不同的治療

亦有服食類固醇藥物

但病情很快急轉直下

11歲已經無法走路

18歲時因為藥物副作用影響

一度病危

急救了5個小時

進入深切治療部

初時醫生跟我說

媽媽可以做好心理準備

即是指樂天想做甚麼便讓他做

只要他開心便讓他做

當時樂天的媽媽Yuki

擔心這番說話

會影響兒子求生意志

所以不斷鼓勵他不要放棄

10歲時醫生指你將要死去

11歲時指你的病醫治不了

等待死亡

15歲時也指你即將死亡

多次被宣告死亡

也不差在這一次

我說你放心吧

你用心在這裡養病

你還要讀大學的

因為他的心願是讀大學

你還要環遊世界

這些事全部未實現

你用心養病

樂天最後渡過了危險期

前年如願考上大學

他指沒有忘記媽媽當日的說話

當媽媽鼓勵我的時候

覺得雖然似是很危險

但身邊仍然有很多人鼓勵我

幫助我

所以令自己不再害怕

現在最寶貴的

是想身體健康

想多看這個世界

不過Yuki仍然不敢大意

因為隨著樂天年紀越來越大

需要複診的專科越多

如果兒子單獨留院檢查

媽媽會有些不放心

樂天不想麻煩他人

所以很多事情

他不敢出聲叫人幫忙

如果媽媽能在身邊

有甚麼事叫媽媽幫忙

會比較好

現在一直很擔心

樂天成年後沒有媽媽陪伴

很多複診都變得不想去

變相他有這個憂慮

樂天要坐輪椅出入

每次複診

Yuki盡量預約復康巴士

一出一入

要花費不少時間和體力

有時會遇上不禮貌對待

但她指在樂天身上

學會樂觀面對

樂天指不用太在乎他人目光

做自己便可以

所以自從他經常提醒的時候

現在我外出便沒有壓力

這天兩母子用了接近5小時複診

回到家的附近時

兩個人都很累

完全處理不了家裡的事

因為回家還要幫他洗澡

也要處理很多事情

我根本沒有太多體力照顧他

所以要休息兩至三個小時

才能繼續照顧他

痛嗎

痛

即使再累

Yuki也堅持幫樂天按摩上肢

鬆弛肌肉

因為兒子才是受害者

所以幫多一點有甚麼問題

有甚麼所謂

最重要是他每天開心

沒有生病

身體健康便足夠了

22歲的樂天

患有罕見病

「杜興氏肌肉營養不良症」

身體多處肌肉退化

平日去哪裡

也要媽媽Yuki從旁協助

我們看看哪張桌子適合

在這裡

前年樂天考上大學

修讀智能製造工程學

兩母子習慣提早入課室

準備上堂

因為樂天身體的緣故

他連拿電腦的能力也沒有

所以進入課室前

我會準備平板電腦、筆

給他上課用

很多事情需要媽媽幫忙

我感覺兒子有點尷尬

但沒有辦法

所以他也要接受

要適應平時和媽媽一起上學

因為平時看見其他同學

都是自己上學

有時需要媽媽幫忙

便會有點尷尬

高多一點、再調高

提起我的手

可以了

受肌肉退化影響

樂天近年手腕無辦法用力

只能夠用手指控制平板電腦

樂天的媽媽Yuki指

兒子曾經因為病情

對將來感到迷茫

他有時會很沮喪

讀再多書又有何用

將來也不會有人聘請

這樣的身體

難道帶上媽媽上班嗎

我說沒關係

怎樣開心便怎樣做

我不能夠打擊兒子

所以他有自己目標

便隨著這一個方向前行

我將來大學畢業工作

或者升學也好

希望繼續和媽媽經歷一切

10歲的芷翹

是罕見病

「杜興氏肌肉營養不良症」患者

她在兩年多前確診

肌肉發展落後於同齡小朋友

父母幫她轉讀特殊學校

課程與主流學校一樣

有中英數科目

每日有3至4份功課要做

識多些字…

我本身便識字

為甚麼我要做功課

沒關係，如果你識字

你不讀字是沒問題

那你告訴我這題目在說甚麼

怎樣回答

不可以一句不懂便不做功課

我不懂得做功課

跟很多小朋友一樣

芷翹有時做功課會鬧情緒

但父母不想女兒

因為患病不注重學業

即使你患有這個病

你也要生活的

你入餐廳看餐牌

懂得認字才能叫食物

我覺得這是基本要求

她不是做不到

只是不想動手寫字

過程要有很多引導

有耐性或者是陪伴

其實你問我們

在入讀這間學校前

我們覺得她考不到文憑試

跟老師商量後

他們給予我信心

原來芷翹能力是可以的

很多事情

不要抹殺她的可能性

我們相信文憑試不是她唯一出路

但我認為經歷文憑試

是需要的

然後根據女兒情況計劃下一步

大王

辛苦了

這夜一家人準備開派對

為哥哥柏翹慶祝13歲生日

芷翹也有幫手做小食

看不到食物

你龐大的身軀擋著鏡頭

一家人自拍留念

父母希望這些家庭活動

可以成為芷翹抗病力量

留一個回憶給女兒

留一個回憶給我們

讓這些好的東西

留在她腦海

將來如果女兒要面對一些問題

或者不開心時

會成為支持她的力量

你要站在板上

開心的同時

他們還記得提醒芷翹

每晚一定要站在板上

幫助下肢拉筋

因為她需要做運動

對她的肌肉舒緩

或者對她病情有好處

所以我們每天都要拉筋

因為她喜歡看電視

我們便用她看電視的時間

順便站在板上拉筋

為了哄芷翹拉筋做運動

兩夫婦花了不少心機

因為香港對這個病研究不多

他們便經常瀏覽外國網站

搜尋相關藥物資訊

這天媽媽帶芷翹複診

做定期檢查

醫生有問我們

芷翹現時走路

或者走樓梯的情況是怎樣

因為要靠我們家長觀察告訴醫生

醫生只是臨床檢查手部及腳部

醫生指芷翹病情沒有明顯轉差

媽媽便放心下來

準備帶女兒學游水

剛才醫生也有提及一件事

其實運動對肌肉病的小朋友

一定是很重要

會阻延到肌肉退化情況

所以也有個動力

讓我們堅持陪她做運動

不錯啊！一件事

前面的手，盡量伸直

兩年多以來

芷翹練得最多的是自由泳式

雖然游泳姿勢有待改進

但教練江俊賢認為不可以操之過急

其實芷翹也是很怕累的人

每一次都會鼓勵她

你這次要游更遠

或者游更快

當芷翹做到的時候

她的自信心

還有對其家人來說

也是一種很大的鼓勵

由接受芷翹患病

至面對病情

父母一直希望女兒有正面情緒抗病

他們亦不斷向同路人取經

在今年4月組成病人組織

商量如何互相支援

據我所知

復康巴士是一個問題

因為復康巴士不是隨傳隨到

當我們資源更多的時候

我想可以提供

更多交通支援或者資助

芷翹父母至今聯繫了19個病友家庭

不過爸爸指

組織過程並不容易

他們在準備成立的前一晚

仍未找到足夠的法定人數註冊

那一刻不知道從哪來的勇氣

便跟自己說不如我打一段長文

將我心中的感受和大家分享

那段文的大概意思是

明天將成立病人組織

但當下只有兩個人註冊

只有我和太太

希望有其他病患的父母

可以挺身而出

幫忙成立病人組織

為我們的患病子女爭取也好

或者支持他們

怎樣也好

我猜最後是真誠打動了Eva

或者打動了Yuki

第二天便成立了病人組織

我很驚奇病人組職內

原來有患病「哥哥」年屆30歲

那次聽到這件事後

覺得很振奮

立刻和兒子分享

我猜在其他家長心裡

也覺得他身體維持得很好

所以我覺得這個組織

給予了家長很多力量

望山又望海

兩夫婦在這兩年來

關心女兒的方法各有不同

但家人之間有著同一個方向

便是陪伴芷翹面對任何逆境

雖說這個病沒法醫治

但現在醫學開始昌明

所以很希望

在女兒有生之年

會有機會改善病情

這也是我們的盼望

如果可以幫到更多

便盡量幫忙

因為我作為哥哥

也要減輕妹妹

爸爸、媽媽負擔

盡量以我能力所限

幫助家人

何時不能走路

何時要坐輪椅

我們沒有所謂

繼續現有我們可以做到的事情

我們都讓女兒去做

也陪著她

陪著她一起面對