Four years ago, Adam Conlon was diagnosed with Mowat Wilson Syndrome.
This is a rare condition which means there is a defect in the DNA strand that affects the major organs in his body - the heart, bowel and brain, and also causes eye deformity.
There are only 147 other cases in the world, and it is even more rare to suffer from all four medical issues like Adam, who is also blind in one eye.
Another symptom of the disease is a very weak immune system which makes winter particularly gruelling for Adam and his mum, Rebecca Conlon. The young boy has been in and out of hospital with brinchiolitis and seizures, and has also been diagnosied with severe epilepsy.
Unfortunately, just before Adam turned two, Rebecca lost her husband Joe to a brain tumour which means she is caring for Adam and her eldest son Eamon on her own.
Adam requires round-the-clock care including two baths a day and a sterile area in the house where Rebecca can wash his stoma and treat his open wounds.
Adam can’t move around himself and needs to be carried by Rebecca or pushed in a wheelchair. While Adam is still developmentally quite young, he is quite tall which makes liting him particularly hard.
Rebecca set up her fundraising page Help Adam! as she needs to modify her house so that she can move Adam aound in his wheelchair without having to carry him. If the mum-of-two is not able to carry out these modifications to her home, Adam won’t be able to safely live there.
Like all mums, Rebecca just wants her son at home with her and knowing just how life limiting Adam’s condition is makes having him in a safe and secure family environment all the more important.
Adam has gone through 15 surgeries and it is his determination that has kept Rebecca going. “Every second Adam is in my life is a blessing and his love and smiles and determination has kept me going when times have been very hard.”