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.
It’s been a little less than two weeks since I started my journey to finding my faith back. I’ve been diligent in the prayer time I set. It’s not been easy. Ever since I started, things have popped up that really distracts me from taking time to pray.
However I continued to persevere and managed to stick to the prayer time I set. There were days that the time was shorter than I would have wanted but at least I was able to stay the course and I hope that I continue to do so.
There are current struggles that I’m facing right now that are hard for me to try and keep faith that God will see me through these challenges.
I’m keeping my fingers crossed.
Prof. Randy Pausch said in his last lecture that there are 3 steps to a good apology. One, admit your mistake, two apologize and 3 ask how do you make things right.
In a way that’s what I realized today. For the things I did wrong, I should admit my mistake to God, apologize and ask him how can I make things right. An addition to that I realized that I also have to make sacrifices.
Right now while I’m at a crossroads in my life. I am praying to God to show me the way. Apart from praying I’m also making a sacrifice. It’s nothing big, something simple but it’s something I love to do. So I stopped playing Xbox 360 last Jan 7. I will not play for 30 days. I love my Xbox and when I get spare moments I do play. Especially now since I have a new game but that’s my sacrifice.
Today’s prayer time lead me to the book of Daniel, chapter 5. This chapter talks about King Belshazzar. He was having a banquet with noblemen from his kingdom and he had asked that they bring out gold and silver cups taken from the temple of God in Jerusalem. He, his noblemen and concubines drank from the cups.
During the party there appeared a hand which wrote down a message on the wall where the king could see it. No one could read it until the Queen Mother told the King of a man named Daniel.
Daniel read the writing and told the King about the message.
To cut a long story short, the gist of the message was that God was angry that the King disrespected him. The passage that stood out to me from the whole chapter is this:
“But you did not honor the God who determines whether you live or die and who controls everything you do.”
Sometimes and I’m guilty of this as well, people tend to forget who the true God is. Instead we worship other things such as people, money, power, etc. While these things might be powerful in our Earthly world, they’re nothing compared to the awesome power of God.
Man to a certain extent controls his own destiny but God controls it completely.
People ask why certain things happen in the world, why God allows such events to happen. I’ve always believed that God gave man free will to do as he pleases. It’s sort of a test to see how well man responds to God’s teachings. The other things such as natural disasters, etc are events that happen as a result of the world God created for us.
Honoring God is important. We should never forget who has total control over our lives. I still find it a little hard to surrender completely. A big part of me still believes that my life is a result of what I make out of it. The actions I do, determine the outcome. Yet there are a lot of things that have happened which I knew were not of my doing but resulted in great things.
I am reminded today that all things I do and all things I accomplish is a result of God’s support. I should honor him for that.
It’s been four days now since I went back to praying on a regular basis. I prayed before but it was sporadic at best. It’s only now after a long time that I really sat down and chose a regular schedule to pray. I know pray in the morning, just after my morning exercise. I’m also trying to make it a habit to blog about my reflections, not for anyone else but just to get my thoughts down.
Today, I opened a book, “Presence – Prayers for Busy People”. It was a birthday present from Grace, the regular nurse that assists in my infusions. I chose two prayers found in the book. One is a morning prayer and the other is for choosing God’s will. Allow me to share both of these to you.
Morning Prayer
Dear Lord,
I thank you for having especially
called me to remind me to pray every day.
Being the busy person that I am, my
demanding schedule has often caused me to take
you for granted unintentionally.
But not I really want to devote you this
time because I love you and I need you in my life.
Thank you for granting me the privilege of
spending this time with you.
Please quiet my heart, take away whatever
burdens I now feel so I can abandon myself
completely to you. Cleanse my heart so my prayers
may be worthy of you.
Teach me how to pray so that my words will come from my heart.
Help me too, to learn how to listen so that
my mind and heart can hear your voice and
understand your will. Amen.
For Choosing God’s Will Dear Father, You are the creative origin of all I am and of all I am called to be. With the talents and opportunities I have, how may I serve you best? Please guide my mind and heart, open me to the needs of my country and of the world, and help me choose wisely and practically for your honor and glory and for the good of all those whose lives I touch. Amen
I also opened my bible randomly and the reading I got today was from the book of Jeremiah again. Specifically Jeremiah 2: 14:19 – The Result of Israels Unfaithfulness.
I guess today’s reading is a reminder to be by God that amidst all the trials I am going to through that I should remain faithful. The reading showed me what happens when you lose faith and stray from the path that God has laid out for you.
Last night it was my mom’s birthday. We had a family dinner at home. It was a great dinner. Good food and wine. I sat there thinking that we’re indeed still luckier than most.
My mom had been wanting to have a family talk, just the four of us to plan out our year and hopefully more than that. So last night was a perfect opportunity about that.
One of the things that I shared with them was my concern of what to do in the future. I’m starting out the year with great challenges ahead. There will be some big changes and I have yet to figure out what to do. This is mostly related to work. So my main concern was what to do about that.
I told them that I had a goal that within my 30s I should have come up with a new and successful business that will sustain our life for the years to come. I still don’t know how to do it but that’s my plan. I have several things I want to do now but right now it’s still a plan.
Today I prayed and instead of randomly picking out a passage in the Bible, I decided to read the gospel for today. The gospel came from Mark 6: 34-44. It narrates the miracle of the 5 loaves and 2 fishes. It shows how Jesus was able to provide for 5,000 people with the simple resources available to them. More than that, after everyone ate, there were still an abundance of food.
I guess in a way, this reading assured me that God will provide. There was a reflection after the reading (I got the gospel through a daily email my uncle forwards to us), it talks about the fact that while God/Jesus provides he asks us to take the initiative. The Apostles provided the 5 loaves and 2 fishes and Jesus did the rest.
I don’t expect God to provide while I’m sitting on my butt and doing nothing. I need to start it and God will take it from there and guide me along the way.
I’d like to share the last paragraph or the reflection.
We praise and thank You, Father God, for providing us with all the things we need in life, and for nourishing us with Your Word, and the Bread of Life, Whom we receive in the Holy Mass. Help us to share these blessings with others, we pray. Amen.
