Ruby’s Liver Transplant Journey

Hi All ,

As many of you already know, Ruby is currently on the waiting list for a Liver Transplant. Ruby was born with a Rare Liver Disease called Alagille Syndrome & Conjugated Hyper bilirubin, that results in liver damage. This Rare disease has really taken away Ruby’s quality of life as it causes so many other health issues which Ruby also has e.g. Jaundice, Severe Pruritus (intense chronic itching), Mild Tricuspid Regurgitation (blood leaking backwards to the upper right chamber of the heart), Mild Pulmonary Branch Stenosis, Kidney Dysplasia, Chronic Kidney Disease, High Cholesterol, Growth/Feeding issues (Ruby has a feeding PEG) and more!

Ruby’s uncle Dean is currently undergoing testing to hopefully become Ruby's living liver donor. This means he will fly back and forward to London to meet the liver team and be assessed.

After many hospital appointments, admissions, tests, scans, x2 liver biopsies etc Ruby was invited over to London to Kings College Hospital for a liver assessment. Ruby met the criteria and was eligible to be placed on the Liver Transplant list. (Thank god for this!)

Right now Shannon and Brian wait to receive that special phone call that a liver has become available for Ruby and they will fly over to London for Ruby’s Liver Transplant.

This has been extremely hard on Shannon and Brian as parents watching their little girl go through all of this and suffer everyday doing normal things in life. It has also been very hard financially for them as a family with the many trips to Crumlin hospital covering the cost of … tolls, petrol/diesel, car parks, food, medications etc. Not to mention Shannon having to leave her job for a year or two to care for Ruby full time. Soon they will have to cover the cost of many flights to and from Kings College Hospital in London as they will be there from 3 weeks to 3 months depending on Ruby’s recovery time. This will also include her uncle Dean if he is a match for living liver donation.

These appointments/hospital stays are going to increase once Ruby receives her transplant.

I know that Shannon, Brian and Ruby would be very grateful if you could help out on this extremely tough journey they are facing as a family. Nothing is too small and every single penny is very much appreciated.

We are so proud of Ruby each and every day, she is a little fighter!! Please keep her in your thoughts and prayers ❤️