Hello all. I have a question and I'd be grateful for answers/opinions. My son has just been diagnosed with a rare and incurable type of hemolytic anemia. He has had this since birth and has been treated for it since he was two months old, he's seven months old now. We've been attending Crumlin hospital regularly for blood tests and transfusions and with this diagnosis we will continue to do so.
My husband is on BTEA and I don't currently work, we have an elder child too, and we are looking into some financial help as we are on a very low income and the cost of travelling to Dublin roughly every week is something we would really appreciate some help with, if there is any we could ask for. We thought we might apply for DCA but it doesn't seem likely that we'll get approved. I don't think they'll consider hemolytic anemia to be serious or life-limiting enough to qualify. I read something i found online called a desk assesment that suggested Hemolytic Anemia is not usually considered severe enough, but Sickle Cell and Aplastic Anemias are more likely to be considered severe enough. Just as a guideline.
I don't know, what do people think? Is DCA not the right type of help for us? And if not, is there anything that might be more relevant? I'm sorry if this is coming out all jumbled, we've only recently been told that his condition will be chronic - until then we'd hoped he could be cured - so anyrhi g that could make his life a little easier would be vastly appreciated. Thanks for reading.
My husband is on BTEA and I don't currently work, we have an elder child too, and we are looking into some financial help as we are on a very low income and the cost of travelling to Dublin roughly every week is something we would really appreciate some help with, if there is any we could ask for. We thought we might apply for DCA but it doesn't seem likely that we'll get approved. I don't think they'll consider hemolytic anemia to be serious or life-limiting enough to qualify. I read something i found online called a desk assesment that suggested Hemolytic Anemia is not usually considered severe enough, but Sickle Cell and Aplastic Anemias are more likely to be considered severe enough. Just as a guideline.
I don't know, what do people think? Is DCA not the right type of help for us? And if not, is there anything that might be more relevant? I'm sorry if this is coming out all jumbled, we've only recently been told that his condition will be chronic - until then we'd hoped he could be cured - so anyrhi g that could make his life a little easier would be vastly appreciated. Thanks for reading.