I am running the Clontarf Half Marathon on behalf of Toby on 15/11/2025.
As most of you know my friend Lucy and her husband had their baby boy Toby during the summer who was diagnosed with Propionic Acidaemia. (PA) is a rare inherited metabolic disorder, which affects the protein pathway (can affect heart, brain, bone marrow etc.). It is a lifelong, life-threatening condition. The main complications associated with propionic acidaemia include recurrent episodes of metabolic decompensation with illness or fasting, cardiomyopathy, movement disorders, bone marrow suppression and recurrent pancreatitis
Currently Toby is taking a life saving drug called Carglumic acid.
This drug is keeping toby stable at home while they are working on long term treatment options .
The process has been started for liver transplantation which unfortunately is not carried out on the Island of Ireland , this will mean frequent travel and a long stay in London.
Any donations would be greatly appreciated to help with medical costs for both Toby and his family ♥️♥️
Organizer and beneficiary
Lucy Gavin
Beneficiary

