jessiebean
Earning My Ears
- Joined
- Aug 18, 2011
- Messages
- 16
Hi... my name is Jessica. I am mom to Micah and Malachi, and we are from Michigan. To clarify, this post is not about my birthday, but rather my son, Micah's.
Micah has a rare genetic disorder called 1p36 Microdeletion Syndrome. Esentially, the deletion itself is not life threatening, but the complications are. This year has been one of the best for him, health-wise.
So when his doctor referred him to MAW, we knew right away, it was the perfect time to sieze the opportunity.
It seems anti-climactic to say what he wished for, as this is a Disney based forum... Of course, he wanted to go to Disney. But specifically, he wanted to be there for HIS BIRFDAY!! On September 23rd Micah will turn the big One-oh, and he wanted nothing more than to celebrate that in style with his favorite Disney characters.
Our first encounter with MAW was in February, when two volunteers came over to meet Micah. They presented him with a beautiful wooden wish box, and asked him what he wanted to do. Disney was it, from the first moment. And so, it began.
Initially, we weren't certain that we would be able to arrange the trip around his birthday, but the staff at our local chapter really came through... We leave the morning of September 18th, and will be coming back home the day after his birthday, which means we can enjoy the entire day with him, in Disney.
To say that he is excited would be the most extreme understatement imaginable. He has been telling EVERYONE we encounter since February about HIS BIRFDAY! (This is probably more exciting to me since he has only really learned to talk over the past year)...
Meet our Family:
The man of the hour! Micah Um:
Micah is a fun loving soon-to-be 10 year old, who loves Cars and his family. He can't wait for his trip!
Malachi:
Malachi is 12, and he is Micah's brother and only sibling. He likes video games, and thinks he's too cool for school. But secretly, he's actually a pretty big hearted kid. (Don't tell him I let the cat out of the bag!)
Finally, Mom and Brian:
I'm mom. My name is Jessica (as previously stated). I am 27, and work in the exciting world of Real Estate.
"Dad" decided shortly after Micah's diagnosis that he was not prepared for all that a life with us would entail, so he is no longer in the picture. Fortunately for us, about five years ago, we stumbled upon a pretty decent stand-in, Brian.
In a nutshell, that's us. We're not your typical Joneses, but we make things work.
Back to the trip...
I knew the it was coming fast, but this morning it hit me. Exactly one month from today, at this exact moment, we will be in the air, on our way... and I still have so much to think about/plan!! So, I searched the web for help, and here I am!
Additionally, his trip has been sponsored by a local Sports News company, and we have been invited as guests of honor to the fundraiser, which will be taking place on my other son, Malachi's 12th Birthday. MAW has arranged for the companies Sports Models to present him with a cake and sing Happy Birthday. I can't say enough wonderful things about our experience so far!
Micah has a rare genetic disorder called 1p36 Microdeletion Syndrome. Esentially, the deletion itself is not life threatening, but the complications are. This year has been one of the best for him, health-wise.
So when his doctor referred him to MAW, we knew right away, it was the perfect time to sieze the opportunity.
It seems anti-climactic to say what he wished for, as this is a Disney based forum... Of course, he wanted to go to Disney. But specifically, he wanted to be there for HIS BIRFDAY!! On September 23rd Micah will turn the big One-oh, and he wanted nothing more than to celebrate that in style with his favorite Disney characters.
Our first encounter with MAW was in February, when two volunteers came over to meet Micah. They presented him with a beautiful wooden wish box, and asked him what he wanted to do. Disney was it, from the first moment. And so, it began.
Initially, we weren't certain that we would be able to arrange the trip around his birthday, but the staff at our local chapter really came through... We leave the morning of September 18th, and will be coming back home the day after his birthday, which means we can enjoy the entire day with him, in Disney.
To say that he is excited would be the most extreme understatement imaginable. He has been telling EVERYONE we encounter since February about HIS BIRFDAY! (This is probably more exciting to me since he has only really learned to talk over the past year)...
Meet our Family:
The man of the hour! Micah Um:
Micah is a fun loving soon-to-be 10 year old, who loves Cars and his family. He can't wait for his trip!
Malachi:
Malachi is 12, and he is Micah's brother and only sibling. He likes video games, and thinks he's too cool for school. But secretly, he's actually a pretty big hearted kid. (Don't tell him I let the cat out of the bag!)
Finally, Mom and Brian:
I'm mom. My name is Jessica (as previously stated). I am 27, and work in the exciting world of Real Estate.
"Dad" decided shortly after Micah's diagnosis that he was not prepared for all that a life with us would entail, so he is no longer in the picture. Fortunately for us, about five years ago, we stumbled upon a pretty decent stand-in, Brian.
In a nutshell, that's us. We're not your typical Joneses, but we make things work.
Back to the trip...
I knew the it was coming fast, but this morning it hit me. Exactly one month from today, at this exact moment, we will be in the air, on our way... and I still have so much to think about/plan!! So, I searched the web for help, and here I am!
Additionally, his trip has been sponsored by a local Sports News company, and we have been invited as guests of honor to the fundraiser, which will be taking place on my other son, Malachi's 12th Birthday. MAW has arranged for the companies Sports Models to present him with a cake and sing Happy Birthday. I can't say enough wonderful things about our experience so far!
