Rosie's Memory list
Donation protected
Rosie our little princess was born in 2015.....at five days of age at the evelina in Westminster.
She went through nine and a half hour's of open heart surgery to repair an interrupted aortic arch asd and vsd......and then spent several weeks going from PICU to NICU and SCBU before returning to her local.
Rosie's heart problems as time went on was just the tip of the iceberg.....little did we know what a big journey she has ahead of her......we found rosie had an unsafe swallow where she can't eat and drink, we went from ng to having a button put in her belly where she is now tube fed 18 hours a day via a pump with high calorie milk.
Rosie really struggles with her development and is at age 20 months, she was found to have a very rare genetic diagnosis called KBG Syndrome and due to it being so rare there isnt much information on this.
Rosie is the size of a two year old but aged four she struggles walking,rosie has scoliosis in her spine so she struggles to walk along with frequent vomiting with no warning bowel problems. Rosie struggles every day but at the same time she is chatty bossy and will always work people round to her way of thinking.
Rosie has been fighting aortic stenosis for the last few years and after taking Rosie for her heart scan on friday we have been told it's much worse....so she is looking to have a special heart scan in next 3 months and then open heart surgery will be on the cards....this scares me and my husband so much because not only have we got to know rosie's little personality but we are not sure how she will cope with another lot of open heart surgery.
We have been told Rosie is very high risk for a stroke or even the worst which we don't even want to think about so with this in mind we would like to make some beautiful memories for Rosie and her big sister Charlotte and Emma and little sister Ruby...obviously the things that Rosie would love to do come at a price and this is why we have put up a GoFundMe page.
Rosie's Wish's
1.MARSH FARM GRANTED ROSIES CHRISTMAS EXPERIENCE TODAY THANK YOU SO MUCH
2.CHRISTMAS EXPERIENCE CENTRE PARKS. GRANTED BY DONATIONS VIA HER PAGE THANKYOU SO MUCH EVERYONE
3.TOY SHOP TROLLEY DASH
IF YOU KNOW SOMEONE WHO HAS A TOYSHOP WE WOULD BE INTERESTED AS EVERYONE SO FAR HAS SAID NO :(
4.PEPPA PIG SHOW WISH GRANTED BY BASILDON ROUND TABLE
5.BUILD A BEAR WISH GRANTED BY BASILDON ROUND TABLE
6.CEBEEBIES LAND
7. THOMAS LAND
8. EURO DISNEY
If you can spare a pound Rosie would be very grateful if not that's fine to and thank you very much for reading our little girls story.
We are hoping to have a couple of events in the pipeline very soon.
If you have any prizes you could donate please just inbox me, or if you have a company that can help in any way that's great too.
If you could share Rosie's page we would appreciate it.
Thank you for reading
Pamela, John, Rosie and her sister's
She went through nine and a half hour's of open heart surgery to repair an interrupted aortic arch asd and vsd......and then spent several weeks going from PICU to NICU and SCBU before returning to her local.
Rosie's heart problems as time went on was just the tip of the iceberg.....little did we know what a big journey she has ahead of her......we found rosie had an unsafe swallow where she can't eat and drink, we went from ng to having a button put in her belly where she is now tube fed 18 hours a day via a pump with high calorie milk.
Rosie really struggles with her development and is at age 20 months, she was found to have a very rare genetic diagnosis called KBG Syndrome and due to it being so rare there isnt much information on this.
Rosie is the size of a two year old but aged four she struggles walking,rosie has scoliosis in her spine so she struggles to walk along with frequent vomiting with no warning bowel problems. Rosie struggles every day but at the same time she is chatty bossy and will always work people round to her way of thinking.
Rosie has been fighting aortic stenosis for the last few years and after taking Rosie for her heart scan on friday we have been told it's much worse....so she is looking to have a special heart scan in next 3 months and then open heart surgery will be on the cards....this scares me and my husband so much because not only have we got to know rosie's little personality but we are not sure how she will cope with another lot of open heart surgery. We have been told Rosie is very high risk for a stroke or even the worst which we don't even want to think about so with this in mind we would like to make some beautiful memories for Rosie and her big sister Charlotte and Emma and little sister Ruby...obviously the things that Rosie would love to do come at a price and this is why we have put up a GoFundMe page.
Rosie's Wish's
1.MARSH FARM GRANTED ROSIES CHRISTMAS EXPERIENCE TODAY THANK YOU SO MUCH
2.CHRISTMAS EXPERIENCE CENTRE PARKS. GRANTED BY DONATIONS VIA HER PAGE THANKYOU SO MUCH EVERYONE
3.TOY SHOP TROLLEY DASH
IF YOU KNOW SOMEONE WHO HAS A TOYSHOP WE WOULD BE INTERESTED AS EVERYONE SO FAR HAS SAID NO :(
4.PEPPA PIG SHOW WISH GRANTED BY BASILDON ROUND TABLE
5.BUILD A BEAR WISH GRANTED BY BASILDON ROUND TABLE
6.CEBEEBIES LAND
7. THOMAS LAND
8. EURO DISNEY
If you can spare a pound Rosie would be very grateful if not that's fine to and thank you very much for reading our little girls story.
We are hoping to have a couple of events in the pipeline very soon.
If you have any prizes you could donate please just inbox me, or if you have a company that can help in any way that's great too.
If you could share Rosie's page we would appreciate it.
Thank you for reading
Pamela, John, Rosie and her sister's
Organizer
Pam Peat Kirkman
Organizer
England