Time is too slow for those who wait,
Too swift for those who fear,
Too long for those who grieve,
Too short for those who rejoice,
But for those who love,
Time is eternity.
時間是那麼的多變－
等待的時候，時間過得特別的慢；
害怕面對的時候，時間偏偏快速的降臨；
悲傷的時候，時間變得好長；
歡樂的時候，時間又變得好短。
然而，對戀愛中的人而言，片刻即是永恆。
A friend of mine sent me this poem last week and I truly feel the essence of every word at this time that every day, every hour, every second passes too anxiously for us. How long more can Ayden wait - for a new liver, for the funds, for the tests, for the surgery? Only TIME will tell.
Monday, November 30, 2009
Thursday, November 26, 2009
It's ok to ASK
Another day, another opportunity for us, and many more doors opened when we knocked. Fundamentally, we need to ASK >>>>
A>> Always find out more, even when I think I already know. It's ok to ask the same question more than once. No question is too stupid to be asked, especially when my child's life is at stake.
S>> Seek clarifications. Don't assume to understand or try to act smart. Ignorance will put us on the losing end.
K>> Know everything and take notes to remember. Knowledge is power, we need all the power we can garner.
Why am I saying all these now? Because I should kick myself for not ASKing enough and losing precious time since last week. I've just found out this evening that Ayden can also receive liver from type O+ blood group donor as O is the universal donor for all blood types. Of course, first preference is his own B+ but O+ is also compatible enough.
Why didn't the doctors explain earlier? Probably because from the moment we were told we need to do the transplant, I was determined to be the donor! Until we got the bad news last Friday that I couldn't, we started to search for another donor frantically and didn't ASK for options. Don't do the same mistake I did, as time is of essence, especially in medical emergencies.
So now we've sent out messages to all our relatives again. Oh Yes...we have to have proven relation donors, due to medical ethics requirements. This applies in both Malaysia and Singapore as the rule is to prevent organ sale.
When there is a genetic implication, doctors usually discourage donors from the same family tree in order to avoid any future complications, even when the donor may seem healthy at present moment. So for this case on Alagille Syndrome, many carriers may not even know that they have the defective gene as they may show very mild symptoms or no symptoms at all. Sometimes it also skips a generation as the chance is 50-50 that it'll be passed on. I've been told by a Geneticist that usually children may not be tested before they reach 18years of age, as every human have the right to know or choose not to know of any medical condition they may be carrying.
Ask for me, I want all my children to know so that they can prepare for their next course of action if they reach the same bridge that their brother has, with their kids or grandkids and on.
Lastly, I would also like to appeal to ppl who's intentions are anything but pure. Please do not scheme to benefit from other's desperations. Do not contact us if you only have your own agenda in mind! We were given this warning by other parents and now we have experience for ourself too. Every living being were born into this world by mothers, and we all know that mothers are willing to go through hell and back to save their kids. Would you want your own mother, or your wife, who's a mother to your own kids to suffer from a scheming trickster at the time she's trying to save your life or your kid's life? Think before you act! Money is impermanent, but death is.
A>> Always find out more, even when I think I already know. It's ok to ask the same question more than once. No question is too stupid to be asked, especially when my child's life is at stake.
S>> Seek clarifications. Don't assume to understand or try to act smart. Ignorance will put us on the losing end.
K>> Know everything and take notes to remember. Knowledge is power, we need all the power we can garner.
Why am I saying all these now? Because I should kick myself for not ASKing enough and losing precious time since last week. I've just found out this evening that Ayden can also receive liver from type O+ blood group donor as O is the universal donor for all blood types. Of course, first preference is his own B+ but O+ is also compatible enough.
Why didn't the doctors explain earlier? Probably because from the moment we were told we need to do the transplant, I was determined to be the donor! Until we got the bad news last Friday that I couldn't, we started to search for another donor frantically and didn't ASK for options. Don't do the same mistake I did, as time is of essence, especially in medical emergencies.
So now we've sent out messages to all our relatives again. Oh Yes...we have to have proven relation donors, due to medical ethics requirements. This applies in both Malaysia and Singapore as the rule is to prevent organ sale.
When there is a genetic implication, doctors usually discourage donors from the same family tree in order to avoid any future complications, even when the donor may seem healthy at present moment. So for this case on Alagille Syndrome, many carriers may not even know that they have the defective gene as they may show very mild symptoms or no symptoms at all. Sometimes it also skips a generation as the chance is 50-50 that it'll be passed on. I've been told by a Geneticist that usually children may not be tested before they reach 18years of age, as every human have the right to know or choose not to know of any medical condition they may be carrying.
Ask for me, I want all my children to know so that they can prepare for their next course of action if they reach the same bridge that their brother has, with their kids or grandkids and on.
Lastly, I would also like to appeal to ppl who's intentions are anything but pure. Please do not scheme to benefit from other's desperations. Do not contact us if you only have your own agenda in mind! We were given this warning by other parents and now we have experience for ourself too. Every living being were born into this world by mothers, and we all know that mothers are willing to go through hell and back to save their kids. Would you want your own mother, or your wife, who's a mother to your own kids to suffer from a scheming trickster at the time she's trying to save your life or your kid's life? Think before you act! Money is impermanent, but death is.
Wednesday, November 25, 2009
The Power of Love
Unconditional love is what Ayden has taught us, and Love Beyond Boundaries is what we are seeing now!
Thank you friends, family and all of you that are contributing and joining us in prayer. We are so thankful for all your support.
Eric (http://kaixindevelopment.blogspot.com)whom we only got to know last week taught us many things to prepare our journey towards liver transplantation for our child. As he has aptly mentioned, the journey will be a difficult one, but we will never walk alone. We will have even strangers coming forward to walk with us.
Again, we are very grateful for all the support we are getting, as every little step will help lead us towards Ayden's full recovery. God Bless us all.
Thank you friends, family and all of you that are contributing and joining us in prayer. We are so thankful for all your support.
Eric (http://kaixindevelopment.blogspot.com)whom we only got to know last week taught us many things to prepare our journey towards liver transplantation for our child. As he has aptly mentioned, the journey will be a difficult one, but we will never walk alone. We will have even strangers coming forward to walk with us.
Again, we are very grateful for all the support we are getting, as every little step will help lead us towards Ayden's full recovery. God Bless us all.
Saturday, November 21, 2009
Alagille Syndrome
Alagille Syndrome(AGS) Hi everyone, I'm Ayden Lazaroo and I'm a 3 years old Malaysian boy of Chinese-Portuguese origin. Let me share with you how special I am. I am born with Alagille Syndrome, which makes me one very special baby in 100,000 births. Alagille syndrome is a genetic disorder that affects the liver, heart, eyes and other systems of the body. Problems associated with the disorder generally become evident in infancy or early childhood. This disorder is inherited in an autosomal dominant pattern. This very rare disease is quite interesting indeed. No doctor can predict how severe the defective gene can affect a carrier. Some kids have no symptoms at all, others like my daddy and Ceh-Ceh (big sis), are so mild that they don't really show much except for a heart murmur. While special ones, like me, may have been diagnosed with prolonged jaundice after birth and continue to suffer from severe symptoms that makes certain organs, such as the liver, becoming unhealthy.
My mommy and daddy are praying that my illness will go away, as some very lucky kids do, by the time they are around 5 years old. Why do their symptoms go away? Nobody knows. Why do some never go away? Only GOD decides this.
Yes, it's common for some aunties and uncles to think I'm younger than my age as I can still fit into a 12 months old baby's clothes. This is because the bile salts that I need to break down fatty foods do not flow out enough. My skin is also yellow because my liver cannot flush out the toxins from my body, the bad things that I don't need still flows in my blood and these poisons my liver even more. Doctors say this is because the ducts in my liver are not as much as and are also much smaller than a normal kid's. So, it's like a clogged drain. As more and more toxins gather, the higher my bilirubin or jaundice count is and the worse my liver becomes.
Will all this go away? Doctors say that I need a new healthy liver now and everything will be fine. Then, I'll be able to run and play catch with my 1 year old neighbour, R. Wouldn't that be so much fun?
Click on to see me do my impromptu penguin dance. That was lots of fun too, but I only showed this once to my mommy and you are lucky my aunty Phebe was quick with the camera, tee hee.
My mommy and daddy are praying that my illness will go away, as some very lucky kids do, by the time they are around 5 years old. Why do their symptoms go away? Nobody knows. Why do some never go away? Only GOD decides this.
Yes, it's common for some aunties and uncles to think I'm younger than my age as I can still fit into a 12 months old baby's clothes. This is because the bile salts that I need to break down fatty foods do not flow out enough. My skin is also yellow because my liver cannot flush out the toxins from my body, the bad things that I don't need still flows in my blood and these poisons my liver even more. Doctors say this is because the ducts in my liver are not as much as and are also much smaller than a normal kid's. So, it's like a clogged drain. As more and more toxins gather, the higher my bilirubin or jaundice count is and the worse my liver becomes.
Will all this go away? Doctors say that I need a new healthy liver now and everything will be fine. Then, I'll be able to run and play catch with my 1 year old neighbour, R. Wouldn't that be so much fun?
Click on to see me do my impromptu penguin dance. That was lots of fun too, but I only showed this once to my mommy and you are lucky my aunty Phebe was quick with the camera, tee hee.
Tears of joy flowed freely,
When your first cries were heard.
What a surprise you gave us,
As you chose to come out when there were no one else:
Just you and Mommy.
Yes, we prepared to welcome you,
Yes, Mommy wanted to have you more than anything else.
To love and to hold,
To nurture and to cherish.
There were many things we planned to give you.
Only, we now realized it was you
whom has given us more than we ever asked for.
You learned to voice your thoughts even before your first birthday,
And you learned to show who's boss, even before we all knew it.
From you, Poh-Poh, Mommy, Daddy, Ko-ko and Ceh-ceh experience so much joy and
happiness,
From you, Mommy and Daddy learned to speak with God more,
From you, Mommy and Daddy learned unconditional Love.
You are giving us so much, my dearest Ayden,
We just want you to know that we thank God,
For we are blessed with you, our Miracle Child.
When your first cries were heard.
What a surprise you gave us,
As you chose to come out when there were no one else:
Just you and Mommy.
Yes, we prepared to welcome you,
Yes, Mommy wanted to have you more than anything else.
To love and to hold,
To nurture and to cherish.
There were many things we planned to give you.
Only, we now realized it was you
whom has given us more than we ever asked for.
You learned to voice your thoughts even before your first birthday,
And you learned to show who's boss, even before we all knew it.
From you, Poh-Poh, Mommy, Daddy, Ko-ko and Ceh-ceh experience so much joy and
happiness,
From you, Mommy and Daddy learned to speak with God more,
From you, Mommy and Daddy learned unconditional Love.
You are giving us so much, my dearest Ayden,
We just want you to know that we thank God,
For we are blessed with you, our Miracle Child.
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