llurgy
DIS Veteran
- Joined
- Oct 2, 2008
Hi all,
We are in the early stages of a M-A-W trip, maybe I shouldnt even be posting yet but I cant wait!
I am so excited for my Daughter! We have just be told today via a phone call that our 12 year old daughter Rebecca has qualified for a Wish.
We haven't a date yet, in fact we haven't even been assigned volunteers yet but we don't care, she has a WISH!
All this started only last week when I asked a question about certain booking dates for WDW on the planning forum. Becca has some disabilities and so we were wanting to go at the quietest part of the year so she wouldn't have to spend all of her precious energy waiting in lines. Several people suggested we try to get her a wish, I just pooh-poohed the idea as not being conceivable but after a neighbour suggested the same thing I thought well it cant hurt to try.
I filled out an online referral last Thursday night and I received a reply on Friday morning asking for more detailed info.
I sent more info and received a phone call on the following Monday saying that she had gotten through the pre-screening process and now it would be dependant on what information our Doctor supplied them with as far as qualifying.
They sent forms out for medical information release on Wednesday, they were filled in and sent back by yesterdays mail. They must have received it this morning, faxed it to our Doctor, he must have written his referral and faxed it straight back as we got a phone call this afternoon telling us that she had qualified for a Wish! Whew speedy or what??
We now have to wait 2 to 4 weeks for our volunteers to come visiting
A little bit of background on Becca.
She was 3 years old when we started thinking something wasnt quite right. She was never an energetic child and started to walk quite late, we just thought she was a little lazy. Instead of doing more and more walking, she seemed to do less as she became tired quite quickly.
In the summer of 1999 just a few months after her 3rd birthday she finished up in hospital for a few weeks with Pneumonia. She would have been released after about a week but they wouldnt let her go because her O2 levels wouldnt go up past 94%. After the second week they finally let her home after making an appointment for the week after to have an heart echo.
We went for the echo and nothing was found and it kinda got left at that for a while.
Fast-forward to January 2000. We found her nearly unconscious on the floor at the side of her bed. We rushed her to the local Hospital where they immediately transfered her to the nearest big Hospital in Columbus Ohio because her O2 counted was only 70% and she wasnt responding to supplemental oxygen. They would have air lifted her but we had a snowstorm happening and the helicopter wasnt flying so we had to slip and slide the 90 miles there in an ambulance on an empty interstate, it was scary, all the sensible people were not out on the roads that night.
After 3 weeks in hospital with the Docs scratching their heads we finally got a diagnosis.
Rebecca was diagnosed with HHT a genetic disease, you can find out about it just by doing a search on Google now, but then there was hardly anything written about it at all, only one doctor in the hospital had even heard of it and they had no idea what to do with Becca.
Becca presents with malformations in her lungs. Basically when her blood is pumped through her heart into her lungs if it passes through one of these malformations it short circuits straight back into her heart. The blood doesn't pick up Oxygen and neither does it get filtered. She has hundreds of these malformations all over her lungs. They have already blocked up the large ones but there are so many tiny diffuse ones that they can only work on a very select few. She has undergone 3 procedures to try and bring up her oxygen levels, she has had the bottom segment of her right lung totally blocked off as that segment and nearly all malformations and hardly any workable lung.
In the years that have passed her O2 saturations have steadily declined, she is now hovering about 72% when laying down and just under 70% when upright.
Her blood has thickened and she is now at severe risk from Blood clots and abscesses on the brain so she has to have antibiotics for every little thing like going to the dentists etc.
She is now homeschooled. She did go to school but it was too much for her energy levels so she started to go 1/2 day only. She is quite immune suppressed and takes ages to get over any little sickness. She was spending so much time sick from school that we finally have to pull her out and the school provided a tutor in home.
The tutor just wasnt enough (only 1 hour per day) so we finally gave up on it and I started homeschooling.
At home Becca looks like any other girl her age, bar being a bit on the blue colored side and very skinny (she only weighs 57lb bless her) but when we go out we have to take the wheelchair everywhere we go, even to Walmart. Oxygen goes everywhere we go also. The Oxygen doesnt give her more oxygen, it just makes it easier to get if she goes into distress.
Becca knows she is going to WDW, we told her we had applied for a wish and she knew where she might be staying if the wish came through.
When we told her about GKTW village all she said was ""Oh great I can make some friends there!"" She is quite lonely bless her, we live very rural and because she doesnt attend school she has only very few friends whom accept the fact that she cant run r even walk for a long time and the fact that she cant play in the heat *** it makes her sick.
I dont even think that she cares about Disney as much as she cares about staying in the Village.
I think I have written a book!! Sorry, its probably more than anyone would want to know, I got carried away.
I am sure that I am going to have loads and loads of questions.
Till next time
Mandy
We are in the early stages of a M-A-W trip, maybe I shouldnt even be posting yet but I cant wait!
I am so excited for my Daughter! We have just be told today via a phone call that our 12 year old daughter Rebecca has qualified for a Wish.
We haven't a date yet, in fact we haven't even been assigned volunteers yet but we don't care, she has a WISH!
All this started only last week when I asked a question about certain booking dates for WDW on the planning forum. Becca has some disabilities and so we were wanting to go at the quietest part of the year so she wouldn't have to spend all of her precious energy waiting in lines. Several people suggested we try to get her a wish, I just pooh-poohed the idea as not being conceivable but after a neighbour suggested the same thing I thought well it cant hurt to try.
I filled out an online referral last Thursday night and I received a reply on Friday morning asking for more detailed info.
I sent more info and received a phone call on the following Monday saying that she had gotten through the pre-screening process and now it would be dependant on what information our Doctor supplied them with as far as qualifying.
They sent forms out for medical information release on Wednesday, they were filled in and sent back by yesterdays mail. They must have received it this morning, faxed it to our Doctor, he must have written his referral and faxed it straight back as we got a phone call this afternoon telling us that she had qualified for a Wish! Whew speedy or what??
We now have to wait 2 to 4 weeks for our volunteers to come visiting
A little bit of background on Becca.
She was 3 years old when we started thinking something wasnt quite right. She was never an energetic child and started to walk quite late, we just thought she was a little lazy. Instead of doing more and more walking, she seemed to do less as she became tired quite quickly.
In the summer of 1999 just a few months after her 3rd birthday she finished up in hospital for a few weeks with Pneumonia. She would have been released after about a week but they wouldnt let her go because her O2 levels wouldnt go up past 94%. After the second week they finally let her home after making an appointment for the week after to have an heart echo.
We went for the echo and nothing was found and it kinda got left at that for a while.
Fast-forward to January 2000. We found her nearly unconscious on the floor at the side of her bed. We rushed her to the local Hospital where they immediately transfered her to the nearest big Hospital in Columbus Ohio because her O2 counted was only 70% and she wasnt responding to supplemental oxygen. They would have air lifted her but we had a snowstorm happening and the helicopter wasnt flying so we had to slip and slide the 90 miles there in an ambulance on an empty interstate, it was scary, all the sensible people were not out on the roads that night.
After 3 weeks in hospital with the Docs scratching their heads we finally got a diagnosis.
Rebecca was diagnosed with HHT a genetic disease, you can find out about it just by doing a search on Google now, but then there was hardly anything written about it at all, only one doctor in the hospital had even heard of it and they had no idea what to do with Becca.
Becca presents with malformations in her lungs. Basically when her blood is pumped through her heart into her lungs if it passes through one of these malformations it short circuits straight back into her heart. The blood doesn't pick up Oxygen and neither does it get filtered. She has hundreds of these malformations all over her lungs. They have already blocked up the large ones but there are so many tiny diffuse ones that they can only work on a very select few. She has undergone 3 procedures to try and bring up her oxygen levels, she has had the bottom segment of her right lung totally blocked off as that segment and nearly all malformations and hardly any workable lung.
In the years that have passed her O2 saturations have steadily declined, she is now hovering about 72% when laying down and just under 70% when upright.
Her blood has thickened and she is now at severe risk from Blood clots and abscesses on the brain so she has to have antibiotics for every little thing like going to the dentists etc.
She is now homeschooled. She did go to school but it was too much for her energy levels so she started to go 1/2 day only. She is quite immune suppressed and takes ages to get over any little sickness. She was spending so much time sick from school that we finally have to pull her out and the school provided a tutor in home.
The tutor just wasnt enough (only 1 hour per day) so we finally gave up on it and I started homeschooling.
At home Becca looks like any other girl her age, bar being a bit on the blue colored side and very skinny (she only weighs 57lb bless her) but when we go out we have to take the wheelchair everywhere we go, even to Walmart. Oxygen goes everywhere we go also. The Oxygen doesnt give her more oxygen, it just makes it easier to get if she goes into distress.
Becca knows she is going to WDW, we told her we had applied for a wish and she knew where she might be staying if the wish came through.
When we told her about GKTW village all she said was ""Oh great I can make some friends there!"" She is quite lonely bless her, we live very rural and because she doesnt attend school she has only very few friends whom accept the fact that she cant run r even walk for a long time and the fact that she cant play in the heat *** it makes her sick.
I dont even think that she cares about Disney as much as she cares about staying in the Village.
I think I have written a book!! Sorry, its probably more than anyone would want to know, I got carried away.
I am sure that I am going to have loads and loads of questions.
Till next time
Mandy
I also read where Becca likes Monster Inc, and since I am headed down to the World in a few days, I was wondering if you would like a postcard mailed to her with their autographs?? I love that movie also, and I thought it might be a nice little surprise for her!
I wrote about it in my TR ,if you want to read it. 
