Help Make A Difference
Alex Needs Your Help
Alex may never walk, talk or have a normal life. Help us support Alex and his family.
Alex was born with two chromosomal deletions. He is the only known child with this particular condition in the world. His family needs our help to support Alex in improving his quality of care.
SOS Build for Alex
The first priority is to raise support and money for a 3-month renovation of the Dunnes’ house.
We aim to start this work in June 2024 and have started drawing up the plans and speaking with builders.
Diagnosis & Lonely journey
Alex Dunne was born with PVL (Periventricular Leukomalacia) which is a type of brain injury.
Alex is the only known human in the world to have these 2 specific genetic deletions in chromosomes 3 and 15 which are believed to be the cause of PVL.
Alexs’ Future
The future for Alex and his family is very challenging. After many battles to even get appointments, Alex eventually had an MRI of his brain. The outcome of this was that Alex is the only known child in the world with 2 significant genetic deletions.
Respite
Currently, the Dunne family has had limited support. David (Alexs’ Dad) has had to give up his career to mind Alex full-time.
The Dunne family has been offered no additional help or support from the HSE.
One of the more challenging aspects of Alex’s condition is his difficulty sleeping.
Support for others
Cliona and Dave have been so shocked by how lonely this journey has been.
From the initial diagnosis where they were told this devastating news over the phone, to having to attend important meetings with consultations alone due to Covid and the lack of information and help available from the HSE.
They want to try and change this for other parents now and in the future.