Blonde hair, blue eyed, Theo is your normal three year old little boy - curious, affectionate, and a force to be reckoned with! However, Theo and his parents, Edel and Brett, have a lot more to deal with than other little boys his age.
Theo’s genetic condition is so rare that it hasn’t been fully diagnosed yet and the only other similar case is in Arizona in the United States. Edel and Brett became worried when Theo wasn’t meeting the normal milestones for his development at around 4 or 5 months old, and sought help, but since then they have helplessly watched his condition continue to progress, with new symptoms, such as his epilepsy appearing all the time.
Edel and Brett told us, “Theo’s condition means that he regresses as he is growing, we have watched him lose the abilities that he has learned - nine months ago we could put him in the car and head off for a visit to his Nana, now he needs an oxygen tank, a stats monitor and so much other equipment - we’ve actually had to buy a van to hold it all. Our families don’t live near us, so sometimes we can feel a bit isolated, sometimes it feels like Theo’s good days are becoming further and further apart.”
"He is such an affectionate boy and he loves to touch our faces or hair, even though he can’t speak, he talks to us with more than words."
"The nurses at Hospice see that, when many people don’t, they know how to communicate with him, and they spoil him rotten too!” “Hospice is our lifeline, it really is. Theo loves going there - we can see it in his sparkling eyes. At the start when we went to Hospice, I couldn’t imagine leaving him with anyone else, but they look after him so well and he loves it so much. It’s like family - I trust them that much."
Read more of our Little Stars Stories