My Story and My Plea - 2013

My dear friends, family members, and strangers who happen to stumble upon this page,

It took me a long time to write this letter last year and I am going to repeat myself and tell you my story, and the reason why I want you to support me in participating in this year's Energy For Life Walkathon.  I know each year you've been asked to donate to many worthy charitable organizations.  Many of you have supported me the last few years.  This is the second year United Mitochondrial Disease Foundation organizes the Energy For Life Walkathon in San Francisco Golden Gate Park.  In writing about my story, I am at a loss for words.  I want to raise awareness, and to let you know why I am trying to do the little that I can to make a difference.

Mitochondrial Disease.... what is that? "Mitochondrial disease occurs when there is a defect in the body’s ‘powerhouses’. The mitochondria fail to produce enough energy. That results in organ systems failing. Imagine a major city with half of its power plants shut down. The same thing happens in the affected person’s body. The brain may be impaired. They may lose vision or hearing. The heart may be weakened, and they may have eating and digestive issues. The symptoms range from mild to severe for each affected person. The disease is fatal and there is no cure."


In Logan's case, we found out that over 90% over his mitochondria were not producing enough energy, esp.  in his brain, thus causing stroke-like symptoms in his brain stem.  Ever since he was born, he had difficulties with breathing, eating, acid reflux, and poor muscle tone.  He stayed at the NICU for a month before being discharged with a feeding tube and a big oxygen tank.  Before he was discharged, he went through a ton of tests to figure out why he was still having problems with feeding and breathing.  There was no clear answer. The doctors hoped that as he grew older, he became stronger.  It was not until a couple weeks before he passed away, that further rare genetic tests revealed that he had Leigh's Disease, a type of Mitochondrial Disease.

*discharged from NICU at one month old*

There is NO cure for Mitochondrial Disease!!

It's not like cancer, where chemo or radiation might help.  It's not a tumor, where you might be able to take it out.  It's not a kidney failure, where a transplant might save your life.  It is basically all of the above and more.  You can only manage each symptom at a time: like putting a bandaid on each time, but never curing the actual illness.

Every 30 minutes, a child who is born will develop a mitochondrial disease by the age of 10.

Imagine the hopelessness you feel when being told your child has a disease with no cure.  Imagine comforting your child each day while he or she is suffering through many visits to the hospital and getting the little veins poked at by different needles.  Imagine what life would be like when your child has a nasal tube and can't go anywhere without an oxygen tank.  Logan spent half of his short life in the hospital, and had experienced all of that.

I want to thank you for reading this far.  I hope you will support me, financially or walking with me on April 13 (Saturday) at Golden Gate Park.  I hope after reading this, you know more about this illness.  I hope after reading this, you will give your child a big kiss and a big bear hug.  The pain of losing a child never goes away.  I hope no other parent has to experience what I had.  I hope we will find a cure soon.  Logan blessed us with his presence, and I want his presence to make a difference.

Energy For Life 2013: San Francisco - 
DONATE to Team Logan the Lobster
April 13, 2013 (Saturday)
Golden Gate Park, Music Concourse Bandshell, 

San Francisco, CA
Registration at 8:00am - 

Walk starts at 9:00am (Rain or Shine) - 5K or 1 Mile



Thank you,

Virginia

My Story and My Plea

My dear friends, family members, and strangers who happen to stumble upon this page,

It took me a long time to write this letter, to tell you my story, and the reason why I want you to support me in participating in this year's Energy For Life Walkathon.  I know each year you've been asked to donate to many worthy charitable organizations.  Many of you have supported me the last few years in March of Dimes/March for Babies. For the first time, the United Mitochondrial Disease Foundation will have the Energy For Life Walkathon in San Francisco Golden Gate Park.  In writing about my story, I am at a loss for words.  I want to raise awareness, and to let you know why I am trying to do the little that I can to make a difference.


Mitochondrial Disease.... what is that? "Mitochondrial disease occurs when there is a defect in the body’s ‘powerhouses’. The mitochondria fail to produce enough energy. That results in organ systems failing. Imagine a major city with half of its power plants shut down. The same thing happens in the affected person’s body. The brain may be impaired. They may lose vision or hearing. The heart may be weakened, and they may have eating and digestive issues. The symptoms range from mild to severe for each affected person. The disease is fatal and there is no cure."



In Logan's case, we found out that over 90% over his mitochondria were not producing enough energy, esp.  in his brain, thus causing stroke-like symptoms in his brain stem.  Ever since he was born, he had difficulties with breathing, eating, acid reflux, and poor muscle tone.  He stayed at the NICU for a month before being discharged with a feeding tube and a big oxygen tank.  When he was discharged, he has gone through a ton of tests to figure out why he was still having problem with feeding and breathing.  There was no clear answer. The doctors hoped that as he grew older, he became stronger.  It was not until a couple weeks before he passed away, that further rare genetic tests revealed that he had Leigh's Disease, a type of Mitochondrial Disease.

*discharged from NICU at one month old*

There is NO cure for Mitochondrial Disease!!


It's not like cancer, where chemo or radiation might help.  It's not a tumor, where you might be able to take it out.  It's not a kidney failure, where a transplant might save your life.  It is basically all of the above and more.  You can only manage each symptom at a time: like putting a bandaid on each time, but never curing the actual illness.


Every 30 minutes, a child who is born will develop a mitochondrial disease by the age of 10.


Imagine the hopelessness you feel when being told your child has a disease with no cure.  Imagine comforting your child each day while he or she is suffering through many visits to the hospital and getting the little veins poked at by different needles.  Imagine what life would be like when your child has a nasal tube and can't go anywhere without an oxygen tank.  Logan spent half of his short life in the hospital, and had experienced all of that.


I want to thank you for reading this far.  I hope you will support me, financially or walking with me on April 14 (Saturday) at Golden Gate Park.  I hope after reading this, you know more about this illness.  I hope after reading this, you will give your child a big kiss and a big bear hug.  The pain of losing a child never goes away.  I hope no other parent has to experience what I had.  I hope we will find a cure soon.  Logan blessed us with his presence, and I want his presence to make a difference.

Energy For Life: San Francisco - 
DONATE to Team Logan the Lobster
April 14, 2012 (Saturday)
Golden Gate Park, Music Concourse Bandshell, 

San Francisco, CA
Registration at 8:00am - 

Walk starts at 9:00am (Rain or Shine) - 5K or 1 Mile



Thank you,

Virginia

The pressure of school

Dear Logan,

Before Aidan went to bed tonight, I asked him to tell me something happy and sad today at school.  He said he couldn't think of anything good, but he mentioned one sad/bad thing.  He said he accidentally crumpled his Math assessment/test paper.  I asked him why, and he said something along the line that he didn't do well in his test.  Actually, he didn't do bad.  He got 18/20 and he only got the 2 Math problems wrong because he was careless, and no because he didn't know the answer.  Math is Aidan's favorite subject, and he has been getting 100% almost every week.  But I noticed he started making careless mistakes when the worksheet mixed addition and subtractions questions together.  He was rushing to finish it, that he didn't read the +/- sign correct.y  When I reminded him to take his time and double-check his work, he said he wanted to be the fastest.  He was actually visibly upset when talking about this Math assessment, and I could feel that he was so frustrated he wanted to cry.  I felt so bad.  I tried to reassure him that he has been doing really well, even if it's not perfect.  But he was adamant that he wanted to be the fastest.  Of course, I tried to tell him that it's better to answer correctly than to finish quickly.  Aidan is so competitive, always wants to win and be the best/fastest, yet sometimes he gives up easily when times are tough.

Aidan is only in Kindergarten and he's already feeling the pressure.  I am blessed that Aidan is pretty smart and has been doing well at school.  I can't imagine what kind of pressure he's going to put on himself when he gets older.  I just wish he won't give up.

Love,
Mommy

Being a parent does not get easier...

Dear Logan,

As I was at church this morning listening to the homily, my mind drifted off to thinking about being a parent and raising a child.  Not that I wasn't paying attention, but the speech of love prompted this thought.

When Aidan was a baby, I often read that being a parent would get easier as the child grows older.  Eventually, I realized I disagree to that saying.  I find that it does NOT really get easier, in a sense that, the responsibility of a parent becomes heavier.  When Aidan was a baby, I worried about him being safe, being fed, being changed, and being attended to.  It might have seemed very difficult, as I was a new parent without family around to help out, and the tiny little baby seemed to delicate.  I remember thinking I wish he's still inside my tummy, as it's safer and I wouldn't drop him on the floor.  We often underestimate a baby/toddler's ability to bounce back from getting hurt, and their adaptability.  It also helps that Aidan was a pretty easy baby and didn't fuss much.

As he grew older, I worried about him bumping into things, putting tiny objects in his mouth and of course, being healthy and safe.  But he was still a good and cute boy, despite some terrible twos behaviors.  Overall, still pretty easy to deal with.  He's not a picky eater, he's friendly and happy, and loved playing with all children.  He enjoyed singing and dancing, and especially playing on the laptop.

Attending preschool was great.  He played with friends, was social and enjoyed learning in school.  He would come home and sing me songs, tell me who he played with, and make up silly lyrics to our make-up songs.  He continued to be in good health (thank god), and was behaving well at school.  But I could see some distinct personality traits coming out.  I saw the stubbornness in him, the difficulty in dealing with frustrations, and generally acting like a four or five-year old boy.  The difficulty in balancing the idea of him still being a 'baby' and old enough to behave a certain way, starts to weigh on my shoulders.

Now that he's 6 years old, I can't use the excuse that he's still young and doesn't understand. Being a parent, it's my job to make sure he understands.  It is not just making sure he's fed, clothed, and safe anymore.  It's more about teaching him good values, and guiding him to grow up to be a good person.  I need to constantly talk to him about being polite, to be grateful and thankful, to not throw a tantrum when things don't go the way he wants.  I need to teach him about sportsmanship, to play fair, to share, to understand that it's ok to lose, and what behaviors are appropriate at different times.  He's at an age where he can slowly grasp these ideas, these intangible ideas that are so difficult to practice in real life.  He's at an age where he's innocent enough that he's eager to learn, and eager to please.

As all these teaching, shaping and molding affect his life in the future, isn't being a parent more difficult now than when he was a newborn?


Love,
Mommy

Aidan's 6th Birthday Party

Dear Logan,

I am so sorry that I haven't been writing lately.  I just can't shed that lazy bug and sit down to write.  But I will make it one of my new year's resolutions to write to you more frequently.

Today, Aidan had his 6th Birthday Party at AMF Bowling Lanes in Santa Clara.  We invited all of his friends at school and I was very surprised that most of them attended.  I believe it's either Aidan was popular in school (he does know the names of many kids in other grades as well), or a bowling party really sounded like fun.  I bet many parents are bored of Pump it Up like me, but if their kids wanted to have a party there, what could you do.  Luckily, when I asked Aidan if he wanted to have a bowling party, Pump It Up or pizza making party, he made a wise choice.

We had about 25 kids today and over 35 parents.  It was a huge crowd.  At times, it was a little chaotic.  I should have planned things a little better, but then, it was my first bowling party as well.  We had 5 lanes, ranging from 4-5 kids per lane.  One of my hiccups was to start lunch a little too late.  Since the kids could continue bowling after pizza, I should have started lunch at 12:45 p.m., instead of 1:15 p.m.  I saw some kids and parents hungry enough to buy popcorn (or the kids saw the popcorn and wanted to get some).  Another hiccup was an injury that happened to Makoto.  He missed a step, tripped and fell down.  He got a nasty-looking cut under his chin.  He was fine ultimately, but the poor boy was crying and was looking so miserable.  In the end, he continued playing and had a lot of fun.  Another hiccup was Aidan's tantrum.  He got upset when another kid bowled for him, while he was still eating pizza.  It actually took a some sweet-talking, threatening and bribing for him to calm down.  He wasn't acting very nice.  Aside from being upset that someone took his turn, he was upset that his score was low because his friend only scored a 3.  He wanted to have the highest score.  He still has a difficult time accepting losses.  We need to work on that.

On the bright side, I surprised Aidan with an Angry Birds cake.  I knew he wanted one, but I couldn't find a store that sold it.  Safeway was unwilling to make a special one, but only the ones listed in their book.  I was definitely not talented enough to make one.  So, this is what I did.  Aidan went with me to Safeway and picked out a Hot Wheels Cars chocolate cake with strawberries filling.  Secretly, I have ordered an Angry Birds Game online, and used the toys there as decorations.  He thought he was getting cars as decorations, but in the end, he was pleasantly surprised to see Angry Birds.  And you know what was the most interesting thing?  All the kids were excited to see the cake!  A few saw me decorating it, but ALL of them knew about Angry Birds.  It's amazing how popular this game is among children.  Not even all parents knew about this game.

In the end, everyone had fun, despite a few hiccups and chaotic moments.  All parents were very nice and helpful.  I was running around, while Hank was taking pictures.  We tried to play host/hostess, but were unable to assist the kids, especially it's a first time bowling experience for most of them.  I am very relieved and grateful that most parents stepped in and assisted, and tried to make this party as smooth as possible.

Aidan received many GREAT presents.  I was very surprised at how generous the parents were.  I guess having a party after the Christmas holidays has its perks...deals for great toys!

I am glad the party is over, and now we can look forward to other celebrations.  Tomorrow is Grandma's birthday, and we'll be having lunch up in S. SF.  Monday is your brother's actual birthday, and I'll be bringing some cupcakes to his class and have a small little celebration.  We'll then go out for dinner, as it's Daddy and Mommy's 5th wedding anniversary as well.  This is one busy weekend!

I wish you could be here to celebrate with us.  But I know you're up in heaven watching all of these events.

Love you,
Mommy