Nell May Connick
Donation protected
Nell woke on 19th June 2016 at 5 am in excruciating pain in her neck to which we thought she had slept awkward and gave her some calpol but took her to A and E just incase but by time we got there calpol had kicked in and she was completely fine and no pain. However a couple of weeks went by with good days in between and then back and forth the docs. Then about a week after I was getting nell changed and noticed she couldn't lift her left arm fully. Straight back to docs and we're told to go home and we will receive a letter with an appointment from orthelpedics.
Luckily the next day Nell was having routine bloods as she bruises very easily and she happened to fall in front of nurses from the paediactric assessment unit in morriston hospital , they were on a training day and they sent us straight there that day and from there a series of bloods, xrays and intense physical exams were done by lots of doctors. Then they sent her down for an MRI on the 2nd day and this revealed a large tumour in Nells neck that looked to them had been there for quite some time and we were sent straight to Cardiff for scans and treatment. The scans confirmed the tumor is inside Nells spinal cord and its grown amongst all the major nerves and blood vessels so any significant growth or removal of this tumor will cause paralysis or even Nell will end up unable to breath for herself. The words they used "it couldn't be in a worse place"
So far the doctors at The Heath have had to do a life threatening operation to just get tissue for a Biopsy so that they could get a diagnosis, which was successful but the operation has left Nell unable to walk and now has no use of her left arm at all. She is currently having physio with the hope that she will walk again.
The tissue was sent to pathologists and they confirmed the tumor is a Pleomorphic Xanthoastrocytoma (PXA) grade 2, extremely rare less than 1% but even more rare where it is. So they sent the tissue for second opinion to be extra certain and have today (09.08.16) been told it's not a PXA but they have confirmed it's a higher grade and been told to enjoy our time with Nell!
Nell will need treatment overseas that isn't available here in the NHS
So please help us try and get her all the help she needs to get her well again with the best possible quality of life that the world has to offer
Luckily the next day Nell was having routine bloods as she bruises very easily and she happened to fall in front of nurses from the paediactric assessment unit in morriston hospital , they were on a training day and they sent us straight there that day and from there a series of bloods, xrays and intense physical exams were done by lots of doctors. Then they sent her down for an MRI on the 2nd day and this revealed a large tumour in Nells neck that looked to them had been there for quite some time and we were sent straight to Cardiff for scans and treatment. The scans confirmed the tumor is inside Nells spinal cord and its grown amongst all the major nerves and blood vessels so any significant growth or removal of this tumor will cause paralysis or even Nell will end up unable to breath for herself. The words they used "it couldn't be in a worse place"
So far the doctors at The Heath have had to do a life threatening operation to just get tissue for a Biopsy so that they could get a diagnosis, which was successful but the operation has left Nell unable to walk and now has no use of her left arm at all. She is currently having physio with the hope that she will walk again.
The tissue was sent to pathologists and they confirmed the tumor is a Pleomorphic Xanthoastrocytoma (PXA) grade 2, extremely rare less than 1% but even more rare where it is. So they sent the tissue for second opinion to be extra certain and have today (09.08.16) been told it's not a PXA but they have confirmed it's a higher grade and been told to enjoy our time with Nell!
Nell will need treatment overseas that isn't available here in the NHS
So please help us try and get her all the help she needs to get her well again with the best possible quality of life that the world has to offer
Organizer
Emma Connick
Organizer
