Alex's fund

This is my grandson Alex, he is almost 7 months old and unfortunately has yet to come home. Alex was born on the 2 November in clonmel hospital but shortly after birth Alex came into difficulty and was transferred to our lady's children hospital in crumlin,it was here we realised Alex was born with a rare condition called Sticklers syndrome and pierre Robin sequence. Pierre Robin sequence is a cleft pallet, undersized jaw and where the tongue is further back than it should be causing an obstruction to Alex' upper airways which in turn meant he needed a tracheostomy at just two weeks old.

Alex is now almost 7 months old,his mam Rebecca has spent the last 7 months with him in crumlin fortunately she has a room in the Ronald McDonald House. While alex older brother ajay is staying with me,ajay is 7 since april, he gets to see his mam once a week unless he gets to go up for a weekend.

The last 7 months has been hectic none the less between tracheostomy training, ties,suctioning, tube changes and in-between all this catching every virus going. This week he ended up back in intesive care on aa ventilator after 6 months been on st.peters ward. Two weeks ago Alex had a peg inserted allowing him to be fed directly into his stomach as his tongue is so far back he isn't quiet able for oral feeding. He is due to get his pallet repair the 6th of June all going well. 
There was a chance of them getting transferred back to clonmel but for some reason that has come to a stand still,they were giving the date of 25of march but 4 days prior clonmel came up with another excuse not to take him as a patient.

Rebecca has been approved a homecare package and will have nurses coming out to her house 7 nighys a week when they do get home, but before that happens there is still abit that has to be done she needs equipment for home, there's a few changes she has to make to her house also. 
His mam is trying to juggle everything on her own as Alex dad passed away just ten weeks before he was born. She has been doing amazingly well considering,I know this will make things easier for them as a family,taking away the strain off the e xtra costs. Not only is there the normal everyday life bills that we all have ie.rent, electricity,gas,school bills etc. but there is also the cost of accomodation in Dublin,travel expenses and then the living costs up there and everything Alex needs being a growing little boy. Everything that is raised here will go towards getting Alex home,getting the house ready for him and also the costs of been in Dublin and travelling.


When I set this up awhile back they had a room in the Ronald Mcdonald house where ajay was able to stay with them but after alex's pallet repair surgery he picked up yet another infection which resulted in them having to move out of there for infection reasons. Rebecca is now in parents accommodation which doesn't allow children, so when ajay does get to go up they are staying in hotels or bnbs. They do get the hotels with a small discount from being in the hospital but its still added costs. Alex is  now 10 months old and still in crumlin, all his medical equipment has been delivered we are in the midole of getting the house ready for him but we are still waiting for nurses to cover our homecare package so we can get them home for good. I honestly can't thank people enough for their generosity, everyone has been amazing.