An Irish couple have been left heartbroken after learning sad news about their four-year-old boy and unborn baby in just a week.
Shannon, 24, and Eoghan, 30, were left heartbroken after their little boy Riaghán, 4, was diagnosed with Metachromatic Leukodystrophy (MLD) earlier this year.
Until recently, Riaghán was a perfectly healthy happy four-year-old: walking, talking, and laughing.
His parents were shocked to find out he had inherited a rare disorder that will cause a progressive loss in his physical and, later, mental skills.
Sadly, Riaghán is already symptomatic and in just months their bubbly boy has lost his ability to walk unaided and his speech has deteriorated.
Tragically, because there is no current treatment for the disease, Riaghán will need 24-hour care for the rest of his life.
Just when the couple thought things couldn’t get worse, they found out their new baby – due in January – has no spleen and has trouble with his or her heart.
This means that in December, days before Christmas, they will need to stay a minimum of ten nights in hospital in Dublin and the baby will need to have an operation right after being born.
Leaving Riaghán over Christmas will be incredibly hard for the young couple, adding to the stress of an already horrific situation.
Shannon’s cousin Siobhan Gordan has set up a GoFundMe page for Riaghán to try relieve some of the financial stress that comes with these diagnoses and try to create a comfortable journey for Riaghán.
Siobhan said: “As a parent myself, I struggle to write this. I can't even imagine living through it. I would love to be successful in raising money and it may give them some comfort knowing they can care for their children without any financial worry.”
Riaghán will need a wheelchair, cot bed, wheel-chair friendly car, and a change of accommodation as their house is not suitable. They will need to travel regularly to Dublin with overnight stays for appointments. Riaghán will also need physio twice a week.
After the expected baby is tested for MLD, if he or she is diagnosed with MLD, they will need to look for trial treatment which will involve travelling abroad.
If Riaghán was tested at birth for MLD, he would have more options to help him.
Although It can be detected with a blood test, it is not offered at birth. Shannon and Eoghan want to spread awareness around this disease to help others.
