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.

Rare Love

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.

Category

Comics

Published

February 2013 (1st edition)

Publisher

Bbluesky Co. Ltd.

Language

English

(Other versions: Traditional Chinese, Simplified Chinese)

Pages

144

Price (Printed Version)

HK$78

  1. Message from Mrs. Ellie Ching, Chairperson, HKMPS
  2. Message from Dr. Joannie Hui, HKMPS Advisor, Senior Medical Officer, Department of Paediatrics, Prince of Wales Hospital
  3. I want to grow up – Wu San Yee, Sandy
  4. Beanie’s Dreamy Diary – Ho Hau Yi
  5. Sticky Beans in Wonderland – Choy Po Yee
  6. A Joyful Bean Life – Tsang Wai Yin
  7. A Wish – Man Wing Yi
  8. MPS Bean and Dream – Chan Wai Sze
  9. From That Year On – Leung Yee Ting
  10. A Pakistani Family – Wong Chiu Yan
  11. But… – Lau Yin Yee
  12. Energetic Bunny – Lau Yuen Que
  13. Annie, Johnny and the Magical Crayon – Chan Nok Sze
  14. My Position – Chan Ho San
  15. Beanie’s Path – Wong Ka Kit
  16. A Different Bean – Kwan Wing Yee
  17. Who Understands the Beanie Heart – Lam Kwun Tat
  18. Winners of the “Rare Love” Illustration and Comic Competition
  19. About the Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
Rare Journey

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.

Category

Prose

Published

July 2011 (1st edition)

Publisher

Bbluesky Co. Ltd.

Language

English
(Other versions: Traditional Chinese, Simplified Chinese)

Pages

108

Price (Printed Version)

HK$68

  1. Preface 1: Mrs. Selina Tsang
  2. Preface 2: Dr. Chow Chun Bong
  3. Preface 3: Mrs. Ellie Ching
  4. I will live wonderfully – Joe Lai
  5. Words from the bottom of my heart – Karen Chau
  6. If I knew magic – John Li
  7. Bittersweet – Jocelyn Wong
  8. An enzyme-lacking drummer – Chun Ho Wong
  9. I’m tall – Mavish Sultana
  10. It doesn’t take much to be happy – Jay Shum
  11. Reborn – Johnny Yeung
  12. A rule-abiding foodie – Karen Kong
  13. With life there is hope – Terry Lai
  14. Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
Rare Parents

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.

Category

Prose

Published

May 2010 (1st edition)

Publisher

Bbluesky Co. Ltd.

Language

English
(Other versions: Traditional Chinese, Simplified Chinese)

Pages

128

Price (Printed Version)

HK$68

  1. Message from the Chairperson
  2. Message from the Vice Chairperson
  3. Foreword 1
  4. Foreword 2
  5. Mother Chau Ho Fung-ming : Little swallow in my heart
  6. Father Reuben Cheng : Our angel
  7. Father Stephen Ma : Distressed papa, happy papa
  8. Mother Chung Man Shuk-man : Three letters
  9. Mother Wong Lai Wing-jun : Walking our own paths together
  10. Mother Yeung Yeung Siu-foon : Twists and turns
  11. Mother Ngai Kong Lei-sun : Short days, long nights
  12. Mother Nighat Sultana : Journeys in hope
  13. Mother Leung Wong Pik-Ngor : The world is for my child to see
  14. Mother Tang Tsang Ka-lei : Still my big kids
  15. Mother Christina Hellmann-Ipsaryaris : Stormy course
  16. Mother Ching Ma Oi Lee : Hitting the jackpot twice
  17. 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.

Category

Story Book

Published

July 2008 (1st edition)

Publisher

Bbluesky Co. Ltd.

Language

English
(Other version: Traditional Chinese)

Pages

56

Price (Printed Version)

HK$65

  1. If Your Life Were a Letter
  2. What is Mucopolysaccharidoses (MPS)?
  3. Tang Wai-man, Danny Tang x Amanda Fung, Yanki Lee
  4. Mavish Sultana, Hamza x Anothermountainman
  5. Chau Hiu-yin, Jay Shum x Clement Yick
  6. Eric Ma, John Lee x Ducky Tse Chi Tak
  7. Mak Chi-yan, Lee Sum-yu x Gideon Lai
  8. Annie Yeung, Johnny Yeung x Shana Cheung
  9. Doctor’s Words: Treatment Trends in MPS
  10. Acknowledgements

A small six-fold stand-up leaflet introducing the disease Mucopolysaccharidoses, the treatment for them, and our organisation.

Category

Factsheet

Published

2009

Publisher

Bbluesky Co. Ltd.

Language

English
(Other versions: Traditional Chinese, Simplified Chinese)

Pages

12

Price (Printed Version)

Free

Little Giants-Dreams of Braving MPS

“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.

Category

Story Book

Published

September 2006 (1st edition)

Publisher

Bbluesky Co. Ltd.

Language

English
(Other versions: Traditional Chinese, Simplified Chinese)

Pages

80

Price (Printed Version)

HK$58

  1. Preface: Stephen Ma, Chairman, Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
  2. We Are All the Same: Don Li, Ambassador of Mucopolysaccharidoses & Rare Genetic Diseases
  3. You Can Help Contribute to What They Need: Mandy Chiang, Ambassador of Mucopolysaccharidoses & Rare Genetic Diseases
  4. The Beanie Story I
  5. MPS Cases: An Introduction
  6. I’m Only Three Feet Tall: Eric Ma
  7. My Mother: John Li
  8. You Made Mom a Different Person: Karen Chau
  9. Mom Is by Your Side: Leung Ka-po
  10. I Have a Mouth: Alan Chim
  11. Everyone Is Different: Mavish Sultana, Hamza Shahid
  12. Brothers of Different Temperaments But Like Hearts: Tang Wai-man, Tang Wai-chi
  13. If One Day You Needed Me: Johnny Yeung, Annie Yeung
  14. Photo Album
  15. The Beanie Story II
  16. MPS Dreams
  17. 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)

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.

Lifes_Rainbow-Cover

Author

陳雯芳

Category

Prose

Published

1999

Publisher

Metro Broadcast Corporation Limited

Language

Traditional Chinese

Pages

105

Format Description

PDF

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.

ePub

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.