陳家琦

徐動型腦癱(徐動型腦麻痹)
思想被困身軀 腦癱少女說不出的抉擇人生

「想食豬扒飯還是雞扒飯?想食豬扒飯望呢邊」,媽媽邊說邊搖一搖自己舉在家琦眼前的左拳頭,「想食雞扒飯就望呢邊」,又搖一搖右拳頭。躺在沙發上不能言語、不能控制身軀的陳家琦,來回掃視媽媽的雙手後,目光最終停在左手,用雙眼告訴媽媽她的選擇。
無論是豬扒飯雞扒飯、想坐輪椅還是坐梳化,母女間透過不斷的選擇題溝通。但在家琦呱呱墮地一刻,便面對了人生最大選擇題:生還是死。

靈魂被困痙攣身軀
 
「家琦(19歲)是徐動型腦癱,醫生話比較麻煩,因為佢個腦乜都知,但肢體、手啊、腳仔啊,偏偏唔受控制,又講唔到。」媽媽坐在梳化上,邊按摩着家琦的小腿邊說。
 
躺在旁邊梳化的家琦,努力擰頭想看着媽媽,偏偏身軀四肢不受控制,向着相反方向繃緊彎曲,唯有發出「唔唔」抗議的聲音。身型嬌小的媽媽,一聽便懂得意思,吃力地抱起女兒,替她擺放姿勢。
 
攣縮的筋腱肌肉就像束縛衣般,緊緊綑縛着家琦的軀體,她要幾經掙扎,才能把手撐直;吃飯時要努力把口張開,迎接母親餵給她的一口飯。媽媽把握張口的一剎那,把食物送進口裏。就像每時每刻不斷搏鬥,吃一碗剪碎了的麵要個多小時,家琦消瘦得只有50多磅。

Other Causes

Only Two Cases Worldwide
Siblings combat rare disease with smiles

Chen Yau Chun, Chan Ka Wa
Hereditary Spastic Paraplegia

Nonstop Spasms, Sleep Apnea 80 times an Hour
Every night is a miracle for boy with SSADH

Ho Junjie
SSADH

Little Miss Sunshine: “No crying! No pain! I want to get better!”

Bux Hei Yau
Developmental Dysplasia of the Hip

Brothers with Mucopolysaccharides
The mother Just wants to hear her elder son say ‘Mummy’ again

Hui Wai cheung, Hui shing hao
Mucopolysaccharidosis IIIA

Estimated 4 years Left to Live
14-year-old “Dream Chaser” won’t let SMA stop her

Lai Kwan Yi
Spinal Muscular Atrophy

Skeletal Deformation and Scarred Organs
Boy with MPS: “I am not giving up!”

Chu Yat Long
Mucopolysaccharidoses Type VI

DMD Warrior: Your hug carries me through

Chen Tsz Kin
Duchenne Muscular Dystrophy

Treading the line between Life and Death
Aspiring 13-year-old Writer with SMA

Yiu Sum Yuet
Spinal Muscular Atrophy Type 1

Two fingers left – Girl with SMA fights to live to the fullest

Josy Chow
Spinal Muscular Atrophy

Girl with TSC gives back to society through painting

Michelle Lam
Tuberous Sclerosis Complex

Daughter with Rett Syndrome; Rapid Regression
Mom: "Waiting for the 3 little words"

Sze Ka Yan
Rett Syndrome

Forever Smiley Little Angel

Chloe Chan
Angelman Syndrome

At death’s door: “Son, I’ll take care of you till the very end”

Edward Young Kwan Lam
Duchenne Muscular Dystrophy

Boy with Muscular Dystrophy, “Let him live for as long as he can”

Lok Chun-Ting
Muscular Dystrophy and Neurological Disorder

The Spinal Muscular Atrophy Girl: Soaring Against the Wind on Wheels
The Power of Three Fingers: P

Tse Cheuk Yau
Spinal muscular atrophy type 2

Semi-paralyzed girl with a rare spinal glial tumor loves to adventure

Yeung Ka Ying
spinal glial tumor

Rare Disease Boy with Glaucoma Facing Darkness
Mother Overcomes Depression to Illuminate Her Son's

Lam Pok Yin
Rubinstein-Taybi disease (RSTS)

"Rare Disease X File: Girl Becomes Multiply Disabled Over Three Years

Hester Chan
Unknown rare disease

母子同病變 無懼連環醫療失誤 勇抗不治症

Wong Wai Lung
ATAD3A

放棄自殺 小腦萎縮青年:「我選擇生存!」

曾錦源
小腦萎縮症

「拇指姑娘」需日打激素 醫生難料成長變數

羅紫羽
羅素西弗氏症

透視罕見病:黏多醣症(一) 長不大的小飛俠 勇抗退化惡疾

蕭曉進
黏多醣症四型

肌萎港大畢業生 認病不認輸

蔣衞錕
杜興氏肌肉營養不良症

無力揹水樽 難阻飛翔夢

莫皓翔
脊柱側彎症