Please help Verity get well
Donation protected
Verity was successfully operated on in Boston Children's Hospital two years ago to remove a tumour on her heart. Your donations made this possible. She has recently returned to Boston for a check up to ensure she is recovered.
We are now home from Boston!
No residual tumor was found on the MRI and her cardiologist was very pleased with her progress. Verity is fighting fit.
However we now have another hurdle to get over, involving yet more surgery in America.
You might remember me mentioning that Verity has been having issues with her swallowing. This has been there since birth but we attributed this to her tumour and previous doctors have told us she just has reflux.
It turns out that this is likely somehow linked with the tumour and the specialists in Boston are confident that she has a condition called a laryngeal cleft along with weakened throat muscles. This is an abnormal communication between the oesophagus and the windpipe causing her to aspirate and choke on thin foods/fluids. We have been thickening her drinks to help her swallow more safely.
When a baby is in the uterus, the oesophagus and windpipe are one tube, towards the end of pregnancy this tube almost gets zipped closed to form 2 tubes. Verity’s doesn’t seem to have closed all the way, leaving a cleft at the top for liquid to spill over. This process happened at the same time in pregnancy that the tumour formed.
This situation needs to be fixed as it will eventually cause damage to her lungs and she cannot live on thickened liquids her entire life.
Due to Verity’s cardiac history and the need for another surgery so soon, this has to be done in Boston.. we have exhausted all avenues in England and all roads lead back to a Dr Rahbar in Boston. Verity will have investigations in the form of a swallow study and a camera under general anaesthetic. The actual surgery itself involves closing the cleft and being a fairly complicated surgery to undertake it needs to happen in a centre who understand and can deal with her cardiac history.
The anxiety and financial strain on us has been massive and as this is our fourth trip back to Boston in 2 years, we have exhausted all previous funds.
We are so grateful that the Ray Tye Medical Aid Foundation are funding the surgery for Verity, however to enable us to take this next journey as a family, we have set up a go fund me page to help relieve the financial strain this is putting us under. We will likely be in Boston for around 3-4 weeks.
All being well Verity will continue to have
repeated follow up appointments at the Portland in London when we return with a Boston recommended consultant who is happy to take over Verity's care while still keeping the communication with Boston open.
We would be so grateful if people could share and donate to Verity’s go fund me page to enable Russell and I to be there for Verity together. The costs associated with being in Boston for a further period of time are huge and we are asking for your help to get us through what we hope will be her final challenge.
You have all been so wonderful already in helping our little girl and we mean it from the bottom of our hearts when we say thank you. ❤️
We are now home from Boston!
No residual tumor was found on the MRI and her cardiologist was very pleased with her progress. Verity is fighting fit.
However we now have another hurdle to get over, involving yet more surgery in America.
You might remember me mentioning that Verity has been having issues with her swallowing. This has been there since birth but we attributed this to her tumour and previous doctors have told us she just has reflux.
It turns out that this is likely somehow linked with the tumour and the specialists in Boston are confident that she has a condition called a laryngeal cleft along with weakened throat muscles. This is an abnormal communication between the oesophagus and the windpipe causing her to aspirate and choke on thin foods/fluids. We have been thickening her drinks to help her swallow more safely.
When a baby is in the uterus, the oesophagus and windpipe are one tube, towards the end of pregnancy this tube almost gets zipped closed to form 2 tubes. Verity’s doesn’t seem to have closed all the way, leaving a cleft at the top for liquid to spill over. This process happened at the same time in pregnancy that the tumour formed.
This situation needs to be fixed as it will eventually cause damage to her lungs and she cannot live on thickened liquids her entire life.
Due to Verity’s cardiac history and the need for another surgery so soon, this has to be done in Boston.. we have exhausted all avenues in England and all roads lead back to a Dr Rahbar in Boston. Verity will have investigations in the form of a swallow study and a camera under general anaesthetic. The actual surgery itself involves closing the cleft and being a fairly complicated surgery to undertake it needs to happen in a centre who understand and can deal with her cardiac history.
The anxiety and financial strain on us has been massive and as this is our fourth trip back to Boston in 2 years, we have exhausted all previous funds.
We are so grateful that the Ray Tye Medical Aid Foundation are funding the surgery for Verity, however to enable us to take this next journey as a family, we have set up a go fund me page to help relieve the financial strain this is putting us under. We will likely be in Boston for around 3-4 weeks.
All being well Verity will continue to have
repeated follow up appointments at the Portland in London when we return with a Boston recommended consultant who is happy to take over Verity's care while still keeping the communication with Boston open.
We would be so grateful if people could share and donate to Verity’s go fund me page to enable Russell and I to be there for Verity together. The costs associated with being in Boston for a further period of time are huge and we are asking for your help to get us through what we hope will be her final challenge.
You have all been so wonderful already in helping our little girl and we mean it from the bottom of our hearts when we say thank you. ❤️
Organizer
Emily Davy
Organizer