Journey’s Lymphatic Malformation Treatment

Hi all, we’re Journey’s mum & dad.

As most of you are aware Journey has a rare life long condition called Extensive Vascular Lymphatic Malformation, for those of you who don’t know what this is, it is a fault in her lymphatic system meaning she has excessive fluid covering the top half of her body, making it impossible for her to fight any infections as the system is not working. As seen in photos, Journey has constant swelling which she will never be able to get rid of, but can be treated to keep stable as she gets older.

Journey’s current consultant is based at Great Ormond Street in London, who have been overseeing her since the day she was born, we have frequent visits to here for ultrasounds, MRIs and blood tests.

This condition is currently incurable, the NHS have been amazing in what they can offer medication wise when Journey turns one, but can also be treated alongside this privately with something called CDT. We were going to wait this out until she had her 1 year visit with GOSH before we took her for a consultation in Birmingham with a Lymphologist, but as we stand she is currently in Great Ormond Street awaiting a big operation as she has developed a serious case of Cellulitis in her arms and is being treated for sepsis, after speaking with all the amazing specialists in London about this, we have been told that with her condition she is prone to getting Cellulitis as much as 6 times a year!! So we are wanting to get her to this private specialist in Birmingham as soon as possible to prevent her becoming this poorly again, it has been heartbreaking to see her like this. We have been made aware that it is £180 per hour for the treatment that can be done to keep this under control, and this could be needed 3 times a week depending on what they say at her consultation (consultation alone is £240). All of this with still be along side the help of all of the amazing people at Great Ormond Street, so she has the support and treatment from the best teams both NHS and Private. 

So we are pleading help from all of our amazing friends, family and all others who would be willing to help raise the money to get our girl’s treatment started as soon as possible, all money raised will cover treatments, travel costs and accommodation while there, help with costs for new equipment needed for her and travel expenses to get to her routine appointments at Great Ormond Street. 

Please follow our Facebook page ‘Journey O’Connors Journey’ for full updates and story of our girl.