Charlottes Wheelchair Vehicle
Donation protected
We are hoping that you might help our family raise some money to purchase a vehicle for our Miss Charlotte. Below is our our story about Charlotte.
3 Weeks ago Charlotte went through some major surgery for her scoliosis and as a result we are no longer able to do the things we use to do with lifting etc. For example Dad use to carry Charlotte up and down stairs get her in and out the car but now she can not be lifted without a hoist and we have to be careful when we move her that we don't twist her hips as she now has rods in her back.
We purchased a van two years ago with the input of an OT who told us we could convert it to a wheelchair van but after discussions with business's in Melbourne we have been told it is not possible as it is an import and does not meet laws to cover us if we had an accident. We are very upset as we put all our money into the purchase and we are now having to start from scratch again!
We are hoping that we can get help through friends, family and strangers to help us get our Little Charlotte mobile. Our history is as follows:
Charlotte has Rett Syndrome and was diagnosed at age 4. Prior to that that she had a few other issues going on and was significantly delayed in all areas of development.
At 10 months she had surgery to repair her twisted bowel and things went well.
Over the past 18 years we have had ups and downs with Miss Charlotte. She went from walking and eating, even tho delayed, to losing the ability to do those basics. At age 5 she was confined to a wheelchair and had to have her food given to her via a PEG in her tummy as she could no longer eat and drink. She lost all ability to make noise and was unable to do anything for herself ( just one of the things that happens to girls with Rett's).
Over time as she got older she was able to bring back the ability to make noises and to smile! I remember how we cried when one night Ryan tickled her tummy and she smiled and then gave a laugh.
At around 10 years of age Charlotte started to form scoliosis in her back, which is very common in girls with Rett Syndrome. Around 5 years ago we started consulting with specialists about the curve and how it was progressively getting worse. We started visiting The Royal children's hospital yearly for two years and then every 6 months after that. In November 2015 we were advised that it would be around 12 months waiting to get Charlotte booked in to have surgery on her spine as the degree was about 70.
Over the next 16 months we had a number of tests getting her ready to have the surgery, as she is in a high risk category due to her many other complex medical issues!
Last Monday evening Charlotte and I got on the boat and travelled to Melb as the specialists wanted us here on the Tuesday before her surgery on the Friday.
Charlotte and I had some girl time before Ryan, Will and Nan flew up on the Thursday evening.
Friday morning she went into surgery at 8:30am and pretty much didn't get out of theatre until 4pm! It was an extremely long day and we didn't get in to see her until 9pm that night!
The surgery went well and they were happy with the correction of the spine, however she struggled with the work and the anaesthetic over the long period that she had a few issues during the surgery with blood pressure. The anaesthetist said she was one of his most complex cases and they worked hard to keep her!
The reason we didn't see her as soon after the operation is she was in a pretty bad way when she returned to ICU. They had to give her a number of blood transfusions during the surgery as well as platelets due to everything dropping low and losing lots of blood!
When we did get in she was not looking the best and had blown up like a balloon from all the extra volumes of fluid she had to be given. We have taken progress pics to see how far we have come and as of today it's been huge!
Miss Charlotte is an amazing fighter and has been through so much in her short 18 years but from this surgery we are excited that she now can sit more comfy in her chair. That the fluid in her lungs that she had from the scoliosis and making her hunch might now allow her lungs to work better. Not only these positives we hope that just her general quality of life will be even better.
3 Weeks ago Charlotte went through some major surgery for her scoliosis and as a result we are no longer able to do the things we use to do with lifting etc. For example Dad use to carry Charlotte up and down stairs get her in and out the car but now she can not be lifted without a hoist and we have to be careful when we move her that we don't twist her hips as she now has rods in her back.
We purchased a van two years ago with the input of an OT who told us we could convert it to a wheelchair van but after discussions with business's in Melbourne we have been told it is not possible as it is an import and does not meet laws to cover us if we had an accident. We are very upset as we put all our money into the purchase and we are now having to start from scratch again!
We are hoping that we can get help through friends, family and strangers to help us get our Little Charlotte mobile. Our history is as follows:
Charlotte has Rett Syndrome and was diagnosed at age 4. Prior to that that she had a few other issues going on and was significantly delayed in all areas of development.
At 10 months she had surgery to repair her twisted bowel and things went well.
Over the past 18 years we have had ups and downs with Miss Charlotte. She went from walking and eating, even tho delayed, to losing the ability to do those basics. At age 5 she was confined to a wheelchair and had to have her food given to her via a PEG in her tummy as she could no longer eat and drink. She lost all ability to make noise and was unable to do anything for herself ( just one of the things that happens to girls with Rett's).
Over time as she got older she was able to bring back the ability to make noises and to smile! I remember how we cried when one night Ryan tickled her tummy and she smiled and then gave a laugh.
At around 10 years of age Charlotte started to form scoliosis in her back, which is very common in girls with Rett Syndrome. Around 5 years ago we started consulting with specialists about the curve and how it was progressively getting worse. We started visiting The Royal children's hospital yearly for two years and then every 6 months after that. In November 2015 we were advised that it would be around 12 months waiting to get Charlotte booked in to have surgery on her spine as the degree was about 70.
Over the next 16 months we had a number of tests getting her ready to have the surgery, as she is in a high risk category due to her many other complex medical issues!
Last Monday evening Charlotte and I got on the boat and travelled to Melb as the specialists wanted us here on the Tuesday before her surgery on the Friday.
Charlotte and I had some girl time before Ryan, Will and Nan flew up on the Thursday evening.
Friday morning she went into surgery at 8:30am and pretty much didn't get out of theatre until 4pm! It was an extremely long day and we didn't get in to see her until 9pm that night!
The surgery went well and they were happy with the correction of the spine, however she struggled with the work and the anaesthetic over the long period that she had a few issues during the surgery with blood pressure. The anaesthetist said she was one of his most complex cases and they worked hard to keep her!
The reason we didn't see her as soon after the operation is she was in a pretty bad way when she returned to ICU. They had to give her a number of blood transfusions during the surgery as well as platelets due to everything dropping low and losing lots of blood!
When we did get in she was not looking the best and had blown up like a balloon from all the extra volumes of fluid she had to be given. We have taken progress pics to see how far we have come and as of today it's been huge!
Miss Charlotte is an amazing fighter and has been through so much in her short 18 years but from this surgery we are excited that she now can sit more comfy in her chair. That the fluid in her lungs that she had from the scoliosis and making her hunch might now allow her lungs to work better. Not only these positives we hope that just her general quality of life will be even better.
Organizer
Angela Weeden
Organizer
Blackstone Heights TAS
