Publications
MPS Publications
Over the years, we have published five books to document our patients’ and their families’ extraordinary stories as they grapple with the life MPS and rare genetic diseases have given them. The books have provided hope, relief, and support to the patients and their families, educated the public about MPS and rare genetic diseases, and helped HKMPS create public awareness.
In order to share our stories with more people, we have converted the books into e-books, adding English and, for some, Simplified Chinese versions, for free download. If our stories have inspired you, please make a donation.
For publications of our members, please click here.
(Click thumbnails to enlarge)
Title
Rare to See
Category
Prose
Published
July 2022
Publisher
Bbluesky Co. Ltd.
Language
Traditional Chinese
Pages
208
ISBN
978-988-76376-5-3
(Click thumbnails to enlarge)
Title
Beanee
Category
Children’s magazine
Published
July 2020
Publisher
Bbluesky Co. Ltd.
Language
Traditional Chinese
A compilation of comics and illustrations created by 15 university and secondary school students telling the stories of MPS patients and their families. These exquisite works captured the patients’ perseverance and fortitude, their hope for the future, their commitment to giving back to society, their hope for treatment, and the love between the patients and their families and supporters.
Title
Rare Love
Category
Comics
Published
February 2013 (1st edition)
Publisher
Bbluesky Co. Ltd.
Language
English
(Other versions: Traditional Chinese, Simplified Chinese)
Pages
144
ISBN
978-988-19578-6-3
- Message from Mrs. Ellie Ching, Chairperson, HKMPS
- Message from Dr. Joannie Hui, HKMPS Advisor, Senior Medical Officer, Department of Paediatrics, Prince of Wales Hospital
- I want to grow up – Wu San Yee, Sandy
- Beanie’s Dreamy Diary – Ho Hau Yi
- Sticky Beans in Wonderland – Choy Po Yee
- A Joyful Bean Life – Tsang Wai Yin
- A Wish – Man Wing Yi
- MPS Bean and Dream – Chan Wai Sze
- From That Year On – Leung Yee Ting
- A Pakistani Family – Wong Chiu Yan
- But… – Lau Yin Yee
- Energetic Bunny – Lau Yuen Que
- Annie, Johnny and the Magical Crayon – Chan Nok Sze
- My Position – Chan Ho San
- Beanie’s Path – Wong Ka Kit
- A Different Bean – Kwan Wing Yee
- Who Understands the Beanie Heart – Lam Kwun Tat
- Winners of the “Rare Love” Illustration and Comic Competition
- About the Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
Ten rare disease patients share their lives and dreams in Rare Journey, and stories of “comrades” that fought along them. All patients share one aspiration: to graduate, work, care for their parents, and give back to society. Mrs Selina Tsang, wife of ex-Chief Executive of Hong Kong, and Dr Chau wrote the introductions for the book.
Title
Rare Journey
Category
Prose
Published
July 2011 (1st edition)
Publisher
Bbluesky Co. Ltd.
Language
English
(Other versions: Traditional Chinese, Simplified Chinese)
Pages
108
ISBN
978-988-19578-4-9
- Preface 1: Mrs. Selina Tsang
- Preface 2: Dr. Chow Chun Bong
- Preface 3: Mrs. Ellie Ching
- I will live wonderfully – Joe Lai
- Words from the bottom of my heart – Karen Chau
- If I knew magic – John Li
- Bittersweet – Jocelyn Wong
- An enzyme-lacking drummer – Chun Ho Wong
- I’m tall – Mavish Sultana
- It doesn’t take much to be happy – Jay Shum
- Reborn – Johnny Yeung
- A rule-abiding foodie – Karen Kong
- With life there is hope – Terry Lai
- Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
The book tells touching, personal stories of 12 parents in Hong Kong, whose children were born with rare genetic diseases — these are stories of shouldering pain, suffering, despair for the little ones, accepting and overcoming difficulties with courage, and immense love for their children and themselves.
Title
Rare Parents
Category
Prose
Published
May 2010 (1st edition)
Publisher
Bbluesky Co. Ltd.
Language
English
(Other versions: Traditional Chinese, Simplified Chinese)
Pages
128
ISBN
978-988-99703-9-0
- Message from the Chairperson
- Message from the Vice Chairperson
- Foreword 1
- Foreword 2
- Mother Chau Ho Fung-ming : Little swallow in my heart
- Father Reuben Cheng : Our angel
- Father Stephen Ma : Distressed papa, happy papa
- Mother Chung Man Shuk-man : Three letters
- Mother Wong Lai Wing-jun : Walking our own paths together
- Mother Yeung Yeung Siu-foon : Twists and turns
- Mother Ngai Kong Lei-sun : Short days, long nights
- Mother Nighat Sultana : Journeys in hope
- Mother Leung Wong Pik-Ngor : The world is for my child to see
- Mother Tang Tsang Ka-lei : Still my big kids
- Mother Christina Hellmann-Ipsaryaris : Stormy course
- Mother Ching Ma Oi Lee : Hitting the jackpot twice
- About HKMPS
Little giants — 12 people with the genetic disease, Mucupolysaccharides (MPS); the big buddies — 7 local designers. The 12 little giants and the 7 big buddies come together through letters and interviews for an interactive creative art project, “Little Giants X the Big Ds”, where the designers created exhibits based on the little giants’ ideas and dreams. Their ideas and artworks were presented at a May 2008 public exhibition. This book is a collection of their creative works, the ideas behind it, and selected letters between the little giants and their big buddies. Enclosed are 2 letters from the little giants to you as well.
Title
Little Giants
Category
Story Book
Published
July 2008 (1st edition)
Publisher
Bbluesky Co. Ltd.
Language
English
(Other version: Traditional Chinese)
Pages
56
ISBN
978-988-99703-3-8
- If Your Life Were a Letter
- What is Mucopolysaccharidoses (MPS)?
- Tang Wai-man, Danny Tang x Amanda Fung, Yanki Lee
- Mavish Sultana, Hamza x Anothermountainman
- Chau Hiu-yin, Jay Shum x Clement Yick
- Eric Ma, John Lee x Ducky Tse Chi Tak
- Mak Chi-yan, Lee Sum-yu x Gideon Lai
- Annie Yeung, Johnny Yeung x Shana Cheung
- Doctor’s Words: Treatment Trends in MPS
- Acknowledgements
A small six-fold stand-up leaflet introducing the disease Mucopolysaccharidoses, the treatment for them, and our organisation.
Title
MPS Factsheet
Category
Factsheet
Published
2009
Publisher
Bbluesky Co. Ltd.
Language
English
(Other versions: Traditional Chinese, Simplified Chinese)
Pages
12
“Just like everyone else, Beanies work hard everyday. Eating, sunbathing, and exercising, and dreaming of growing up. But they don’t grow much taller…” Their bodies were small, but they had big dreams, that is, to keep moving forward. The stories in this book unveil the dreams and challenges faced by eight families in real life.
Title
Little Giants – Dreams of Braving MPS
Category
Story Book
Published
September 2006 (1st edition)
Publisher
Bbluesky Co. Ltd.
Language
English
(Other versions: Traditional Chinese, Simplified Chinese)
Pages
80
ISBN
988-98181-6-7
- Preface: Stephen Ma, Chairman, Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
- We Are All the Same: Don Li, Ambassador of Mucopolysaccharidoses & Rare Genetic Diseases
- You Can Help Contribute to What They Need: Mandy Chiang, Ambassador of Mucopolysaccharidoses & Rare Genetic Diseases
- The Beanie Story I
- MPS Cases: An Introduction
- I’m Only Three Feet Tall: Eric Ma
- My Mother: John Li
- You Made Mom a Different Person: Karen Chau
- Mom Is by Your Side: Leung Ka-po
- I Have a Mouth: Alan Chim
- Everyone Is Different: Mavish Sultana, Hamza Shahid
- Brothers of Different Temperaments But Like Hearts: Tang Wai-man, Tang Wai-chi
- If One Day You Needed Me: Johnny Yeung, Annie Yeung
- Photo Album
- The Beanie Story II
- MPS Dreams
- What is MPS?
Member Publications
Below are ways to purchase/download the publications authored by our members. If the stories have inspired you, please feel free to make a donation.
(N.B.: Please indicate the patient’s name(s) when you donate)
Author
68 University Students from Hong Kong
Category
Prose
Published
July 2022
Publisher
CUHK Rare GoGo, a rare disease service team of CUHK
Language
Traditional Chinese
Pages
132
Price (Printed Version)
HK$108
Author
Joe Lai
Category
Prose
Published
July 2022
Publisher
Bbluesky Co. Ltd.
Language
Traditional Chinese
Pages
132
Price (Printed Version)
HK$100
Title
Light Boat, Thick Mountains—The Story of a Pompe Disease Patient
Author
Joe Lai
Category
Prose
Published
December 2011 (1st edition)
Publisher
Riding Cultural and Creative Limited
Language
English
(Other versions: Traditional Chinese, Simplified Chinese)
Pages
190
Price (Printed Version)
HK$68
Authors
Eric Ma, Stephen Ma
Category
Prose
Published
June 2010 (1st edition)
Publisher
青源出版社
Language
Traditional Chinese
Pages
184
Price (Printed Version)
HK$68
Purchase
The electronic version of this book can be purchased from the online bookstore of Handheld Culture Limited. Price: USD 3.99 (Approx. HKD 30). All royalties go to the authors and the publishers.
Author
Category
Prose
Published
1999
Publisher
Metro Broadcast Corporation Limited
Language
Traditional Chinese
Pages
105
Format Description
With this format the book’s original layouts are preserved, you may read the book using applications such as Adobe Reader or Apple Preview. This format is suitable for larger screens.
Suitable for all major eBook readers and mobile eBook apps (Such as Apple iBooks and Google Play Books)
Suitable for Amazon Kindle‘s eBook reader and its smartphone and computer apps.