Joshay2234
Joshay2234
- Joined
- Nov 4, 2010
- Messages
- 45
Hi everyone,
First of all, I want to thank everyone for reading. I have been so excited since Haylie was granted a wish in August and now I FINALLY have a space to get all of this excitement out of my body! I am seriously shaking as I type this, I am so darn excited!
Here is the cast of characters: Me, Lisa, mother of 2 fabulous girls and wife of Don, my awesome husband; DD - Joscelyn 8; DD - Haylie 4- wish kid.
Let me give you some background info first. Haylie was diagnosed on her first birthday with a rare malformation of the brain called Vein of Galen Malformation. In this particular vein, the Vein of Galen, there are no capillaries to slow down the blood flow to the heart or to take out necessary nutrients, thus causing the vein to swell up with all of the blood. Eventually, if left untreated, she will go into cardiac failure and that will be it. To date, she has had 13 surgeries with her 14th next week. We live in Northern Illinois and her first 9 surgeries were done at Children's Memorial in Chicago. During the 9th surgery, she suffered a stroke and lost most of the function on the left side of her body. Luckily, being young and the miracle that she is (and also with the help of amazing therapists), she regained back everything except a slight weekness on her left side. Since then, we have been traveling back and forth to NYC for her surgeries. The doctor that does them is actually the pioneer of this treatment for this rare malformation. While he does not know how many more surgeries she will need, we feel a sense of calm to know that we are finally in the right place and she is finally in the right hands.
Okay, you have a little background, now, on to the fun stuff! My mother-in-law had been telling me for a very long time that I should really think about contacting MAW and telling them Haylie's story. I had always heard that MAW was a FINAL wish so I never wanted to even think about going that route. One day, on a whim, I decided to check out the website and sure enough, I was wrong. Once I established that MAW is for children with life threatening illnesses, I filled out the online application right away!
Within days we were told that she was approved and just this week, we received our flight info and trip days. We will be going on February 20th and will return on February 26th, 2011. With my husband and I traveling so often to NYC, we decided to wait until after the first of the year so that he would have ample vacation time at work. Also, with her surgery being next week, we thought it could be something she could look forward to while in the hospital. We are going to the library tonight to stock up on Disney planning books (although I must admit, I have most of the planning done in my mind already. What can I say? I'm a go getter)!
Thanks for reading, Lisa
First of all, I want to thank everyone for reading. I have been so excited since Haylie was granted a wish in August and now I FINALLY have a space to get all of this excitement out of my body! I am seriously shaking as I type this, I am so darn excited!
Here is the cast of characters: Me, Lisa, mother of 2 fabulous girls and wife of Don, my awesome husband; DD - Joscelyn 8; DD - Haylie 4- wish kid.
Let me give you some background info first. Haylie was diagnosed on her first birthday with a rare malformation of the brain called Vein of Galen Malformation. In this particular vein, the Vein of Galen, there are no capillaries to slow down the blood flow to the heart or to take out necessary nutrients, thus causing the vein to swell up with all of the blood. Eventually, if left untreated, she will go into cardiac failure and that will be it. To date, she has had 13 surgeries with her 14th next week. We live in Northern Illinois and her first 9 surgeries were done at Children's Memorial in Chicago. During the 9th surgery, she suffered a stroke and lost most of the function on the left side of her body. Luckily, being young and the miracle that she is (and also with the help of amazing therapists), she regained back everything except a slight weekness on her left side. Since then, we have been traveling back and forth to NYC for her surgeries. The doctor that does them is actually the pioneer of this treatment for this rare malformation. While he does not know how many more surgeries she will need, we feel a sense of calm to know that we are finally in the right place and she is finally in the right hands.
Okay, you have a little background, now, on to the fun stuff! My mother-in-law had been telling me for a very long time that I should really think about contacting MAW and telling them Haylie's story. I had always heard that MAW was a FINAL wish so I never wanted to even think about going that route. One day, on a whim, I decided to check out the website and sure enough, I was wrong. Once I established that MAW is for children with life threatening illnesses, I filled out the online application right away!
Within days we were told that she was approved and just this week, we received our flight info and trip days. We will be going on February 20th and will return on February 26th, 2011. With my husband and I traveling so often to NYC, we decided to wait until after the first of the year so that he would have ample vacation time at work. Also, with her surgery being next week, we thought it could be something she could look forward to while in the hospital. We are going to the library tonight to stock up on Disney planning books (although I must admit, I have most of the planning done in my mind already. What can I say? I'm a go getter)!
Thanks for reading, Lisa
I LOVE this website! I've been going on and on to family and friends about this trip and although they are super happy for us, there is probably only so much that they want to here! Here, on the other hand, it is so nice to see everyone so happy for eachother with so much info to give. 
The Sunday that we arrive, we come in around 11am, so we were thinking of spending the remainder of that day at GKTW, then maybe in the evening, we may head to Downtown Disney.
