根據罕病基金會統計，家中如果有罕見疾病的孩子，每八個罕病兒父親，就有一個會落跑、離婚，不然就是藉由工作來逃避，照顧孩子的重擔多半落在母親身上。
不過，以下這則報導是關於兩個罕病兒老爸，其中一位「潘爸」為了平腦症的女兒，放棄工作、全年無休。而另一位「勇爸」，兒子罹患小胖威力症，胃口總是大得像無底洞，即使太太選擇逃避 不告而別，他依舊堅強地獨自扛起，撫養兒子的重擔。帶您看這些爸爸，如何勇敢面對生命中的意外考驗。
台上六位加起來超過三百歲的中年男子，是業餘搖滾樂團「睏熊霸」，他們都是罕病兒的父親。
口琴手潘爸是退役軍人，退伍後轉行開課輔班，四十四歲時，女兒映竹出生，他原以為這會是晚年的寄託，萬萬沒想到映竹卻罹患罕見的「平腦症」。
[映竹父親 潘于岡]
映竹她現在正在睡覺，氣切了以後，她的機器有很多了，像呼吸器、抽痰機、咳嗽機。
所謂的「平腦症」，是當寶寶在子宮成長時，腦部發育不完全，造成發育遲緩以及智能障礙。雖然潘爸、潘媽懷孕時做過產檢，卻沒發現，生下映竹後，只能靠大量藥物來維持她的生命。
[映竹父親 潘于岡]
她癲癇從第八個月開始，就是每天不斷地出現，藥物已經吃到四種的藥物，還是控制不下來。
也因此，映竹雖然已經十八歲，房間裡卻只有冰冷的醫療儀器，使得家裡就像一間病房。智商停留在嬰兒時期的她，還需要父母二十四小時的陪伴，來打理生活。
[映竹父親 潘于岡]
已經練到這種程度了，就感覺到有狀況了，趕快跳起來幫她抽痰，抽完了，她舒服了，我才繼續我的睡眠。平常睡覺我都隨時牽著她的手。
潘爸打趣的說，由於太太不敢照顧映竹，怕弄傷她，於是責任多是自己扛。十八年來，從沒連續睡超過四個小時。
[映竹父親 潘于岡]
面對這個疾病，接受這個疾病，這是非常重要的，因為你面對它，接受它了以後，你必須要去做你原來價值觀的改變，你的以前東西所有東西全部拋掉。
為了陪伴映竹，潘爸把課輔班收掉，靠著年輕時的積蓄，當起了全職爸爸。只要天氣不錯，潘爸就會帶映竹出遊，只要能走得到的地方，幾乎都留有父女倆的足跡。
由於不知道未來，還有多少的相處機會，潘爸儘可能的讓映竹體驗正常人的生活
也為自己留點回憶。
另一位「睏熊霸」的成員，擔任鼓手、同樣也是照顧罕病兒的蔡?達，為了照顧唯一的兒子「阿勇」，則是每天被煩得哭笑不得。
正在跟爸爸頂嘴的阿勇，是小胖威利症患者，從四歲開始食慾大增，對食物完全無法抗拒，身材也迅速變胖。
[[勇爸 蔡?達]]
他吃過 餿水也吃 生肉也吃。
不管能吃 不能吃 全往嘴裡塞，阿勇因為患有小胖威利症的關係，小小年紀也併發了像是糖尿病、高血壓、高血脂和脊椎側彎等問題，智商也只停留在小一小二的階段。由於阿勇的媽媽發現這是不治之症，在阿勇出生沒多久，就選擇離家出走了。
[[勇爸 蔡?達]]
其實我有跟智勇講過，說我已經跟他媽媽離婚了，我覺得他已經長大了，可以跟他講，因為他每次到學校看到他喜歡的人，他都會去叫人家媽媽 ，其實他心裡面很想要一個媽媽，但是我覺得 這個是我虧欠他的，因為 我沒辦法給他，一個很健全的家庭。
平時以開計程車為生，兼當舞廳鼓手的勇爸，只要有空 就會把阿勇從特殊學校接回來自己看管。
一個是每天兼差養家睡不飽，而另一個則是全心照顧女兒不敢睡覺，如此辛勞。他們表現出來的，是無私的愛，以及不輕易向命運低頭的生命韌性。
The local rock band Sleepy Dads rose to prominence following a popular documentary and an award for best original film song at the Golden Horse Awards. What sets the band members apart is that each of them has a child who suffers from a rare disease. Tonight we look at what life is like for two of these fathers who dedicate their time to the children who desperately need them.
These six middle-aged men have a combined age of 300 years. They form an amateur rock group called Sleepy Dads, which was featured in the recent film “Rock Me to the Moon.” Aside from a love of music, what they have in common is caring for children who suffer from rare, incurable diseases.
The harmonica player, Mr. Pan, is a former military serviceman who opened a cram school after retirement. At the age of 44 he had a daughter, Ying-chu, 映竹 who suffers from the debilitating “smooth brain” disorder.
Pan Yu-gang
Father of Rare Disease Sufferer
Ying-chu映竹 is sleeping. After her tracheotomy she has depended on a lot of machines, such as a respirator, a suction machine and a cough assist machine.
Ying-chu’s smooth brain syndrome occurred in utero, with the incomplete development of the brain resulting in mental retardation and severe developmental delays. Pre-natal tests did not detect these problems and now she must rely on prescription drugs.
Pan Yu-gang
Father of Rare Disease Sufferer
From the eighth month she began experiencing daily epileptic attacks. She had to consume four different types of drugs for treatment.
Ying-chu is now 18 years old. The many medical instruments in her room give the icy feel of a hospital ward. Her IQ remains that of an infant and she requires 24-hour care.
Pan Yu-gang
Father of Rare Disease Sufferer
I’m at a level where I can sense her situation. When needed I wake up, quickly suction out phlegm to make her more comfortable, then go back to sleep. I usually go to bed holding her hand.
Pan says anxiety made his wife scared of caring for Ying-chu. She left full responsibility to him. Over the past 18 years, Pan hasn’t slept more than four hours continuously.
Pan Yu-gang
Father of Rare Disease Sufferer
You have to confront the disease and accept it. This is very important because if you face it and accept it, your original values change. You have to throw away everything that you used to know and value.
To care for Ying-chu, Pan closed his cram school and relied on earlier savings. When the weather is good, he takes her outdoors. As long as there’s a paved path, this father and daughter duo tries to pay a visit.
Because of the seriousness of Ying-chu’s illness and her uncertain future, Pan treasures every moment he spends with his daughter. He is trying to give her a life that is as close as possible to normal and hopes to create long-lasting memories.
Tsai Yung-da is another member of the rock group Sleepy Dads. He serves as their drummer when he’s not busy caring for his son, A-yung.
A-yung suffers from Prader-Willi syndrome, which includes symptoms such as talking back to people and an insatiable appetite. If left unsupervised, his love of food could threaten his health.
Tsai Yung-da
Father of Rare Disease Sufferer
He’s eaten raw meat and even drank rancid water.
A-yung simply stuffs everything in his mouth. This led to childhood obesity and a number of other problems related to Prader-Willi syndrome, such as diabetes, hypertension, high cholesterol and scoliosis. A-yung’s mental development is stuck at the level of a typical first or second grader. Fearing these future challenges, A-yung’s mother chose to leave the household soon after giving birth.
Tsai Yung-da
Father of Rare Disease Sufferer
Actually, I’ve talked with (A-yung) and told him that I divorced his mother long ago. I felt he was old enough to hear this. Every time he goes to school and sees a woman he likes he calls her “mother.” I think this is because he really wants a mother. This is something I owe him, but I can’t give him a totally normal family.
A-yung’s father drives a taxi for a living and plays drums in a ballroom band. Whenever he has time, he picks up A-yung and takes him home from his special needs school to personally care for him.
While one father spends nights moonlighting at various jobs to support his family, another father has shown total devotion to the care of his daughter. Both of these remarkable parents show tenderness toward their family as well as resilience in the face of life’s many challenges.
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