My daughter Kei Kei was diagnosed with Pompe disease when she was two-month old infant. The treating physician said there was an indicated enzyme replacement therapy that was sky-high price. If Kei Kei was not treated, she might leave us by her one year old time. My husband and I did not know about the disease and very sad while puzzled about the next step.
After digesting the medical advice and available option, we made our mind to try our best to help Kei Kei to receive the enzyme replacement therapy so that she would have chance to experience the world as far as the treatment could help.
In the past 12 years, we had received donation from different stakeholders and funding groups in the community for supporting Kei Kei's drug cost some years, not to discontinue the treatment while the Hong Kong government did not subside for some years when her clinical response to the ERT was not good.
Even with enzyme replacement therapy, Kei Kei has been affecting by the disease with muscle weakness that limits her motor function and respiratory problem. One of the most critical medical incidences happened when she was 5. She was diagnosed with severe pneumonitis and has been hospitalized for five months including 3 months in ICU. Afterward, she would need to use ventilator and wheelchair. It was a difficulty time for change of her physical condition and we worries about whether we would be able to take care of her well.
We always embrace a positive mindset to face all these ups and downs as we believe the disease is irreversible and having an active attitude and good emotion would introduce Kei Kei a harmony family environment. We would also want to Kei Kei to live with quality of life, experiencing the world as a normal kid, for example, traveling with public transportation and going to different places in the community. Four years ago, we completed a mission that our family traveled Taipei for vocation via flight.
Lastly, we HOPE Kei Kei would be healthy as her physical condition would very much limit the activities she would do. She has been fancy about visiting Disneyland in Hong Kong. We are looking forward to be there after Covid-19 outbreak.
Pompe daughter: Wing-Kei Chung, 13 year, Hong Kong
Post writer: Mrs. Chung, mother of Wing-Kei
