Our family did a sharing on Today durning 2021 International Pompe Disease Day. We hope our story will inspired those walking the same journey as us not to give up hope and continue to have the faith in God that one day there may be a cure to our child’s condition. 
You can read the article from this link: https://www.todayonline.com/singapore/she-wasnt-expected-be-alive-12-girl-rare-pompe-disease-thrives-parents-love
Or you may open the below PDF to read it (as we do not know when Today will remove the article from their website).
Read here