I woke up today with some really sad news. I got a text message saying that Basti passed away. Basti is the son of Joey and Sheila Valiente. He also had Pompe disease.
I met Joey and Sheila years back. They got a hold of my name and contact details because I was listed as the contact person of the International Pompe Association (IPA) here in the Philippines. They had just found out that their son (then less than a year old) had Pompe disease. Like most parents faced with this life changing news, they were frantic in finding a way to help their son.
I found myself at our dinner table talking to them. They flew all the way to Manila from Cagayan De Oro in hopes of finding help for Basti.
Luckily that was also the time that clinical trials for infantile form of Pompe disease was being done. I know several people involved with this program so we talked about trying to get Basti in that program as well as see specialists that might be able to help him.
Long story short, Joey, Sheila and Basti found their way to the United States and eventually was put on a program that allowed Basti to receive Myozyme, the first Enzyme Replacement Therapy for Pompe disease. This allowed Basti to live several years more.
An infant diagnosed with Pompe disease usually has a mortality rate of up to around 1 to 2 years of age. With ERT this goes up dramatically depending on how soon the infant receives it.
Basti received ERT and as a result his life was extended a few more years. In fact he celebrated his 8th birthday last February.
I was told that Basti died peacefully in his sleep. He wasn’t sick prior to that. He just went to sleep and didn’t wake up. Maybe it was just God calling him home.
Basti lived a happy life despite his severe disability. He had parents who loved him and who did all that they could to ensure that.
We don’t know why these things happen. Why Basti was given a few more years only to be taken away suddenly. I’m sure God has his reasons. We only need to trust in that.
I pray for Basti’s soul. I’m sure he’s up in heaven enjoying himself there. Most of all I pray for Basti’s family, especially Joey and Sheila. Their is a loss that will be hard to get over. After years of fighting, it’s hard to suddenly wake up and not have Basti there. I pray that they are able to get through this tough time.
I didn’t get a chance to meet Basti personally because I only had the chance to meet with Joey and Sheila prior to their going to the United States. I have been always updated about Basti and his condition so I do feel like I know him well. He was also the first Pompe patient that I was able to help in my small way and he will forever be in my heart.
Rest in peace Basti.