Noah's Story
"Our beautiful baby boy Noah was only a few weeks old when we noticed he was losing a lot of weight, very fast. From when we first noticed and went to the GP, he had lost 1.2kg in a week and by 12 weeks was almost back to his birth weight." Tracy, Noah's Mum
"After 11 anxious days in hospital in Cork we were sent to Temple Street as Noah was just getting sicker and sicker and couldn’t seem to absorb any calories from food. His doctor in Temple Street began testing him for a type of disease called Mitochondrial disease. Mitochondria are responsible for producing more than 90% of the energy to sustain life and support organ function. These diseases are inherited, chronic and progressive. There are more than 500 Mitochondrial diseases, so Noah’s doctors began painstakingly sending his samples all over the world, testing for different ones.
While we waited for a diagnosis Noah’s amazing team kept him safe and stable and began to prepare us for the worst. Generally, with a mitochondrial disease, there is no treatment and there is no cure. Words no parent should have to hear. We were living a nightmare and only for our wonderful team on Temple Street, we don’t know how we would have survived. There were so, so many dark days and nights, sitting holding Noah, just trying to feed him and willing him to stay with us. The level of care and compassion is just incredible. Seven weeks into our stay, on February 28th, which is actually World Rare Disease Day, we were told the diagnosis of Mitochondrial Disease was confirmed and, in that moment, I cannot even put in to words what we felt. Unbelievably for us we were then told that amazingly Noah’s specific Mitochondrial disease is one of only two out of over 500 that can spontaneously get better with time and if we could get through this acute phase, there was every hope that in time he would make a full recovery.
Noah is now almost 4 and is growing into the funniest little fellow we have ever met. We still go for regular check-ups with the Metabolic Team in Temple Street but Noah has gone from strength to strength since spending more than 6 months on St Brigid’s Ward in 2019. He loves swimming and snuggles and is honestly the most cheerful, loving little soul. He is the light of our lives and is absolutely adored by his 2 big sisters. Our tiny superhero, although he is not so tiny anymore.
Â
Noah is now about to start his 2nd year of preschool, amazing considering not so long ago he wasn’t expected to hit a milestone or make it to the age of one. We have so much to be grateful for and will never forget all the wonderful staff in Temple Street who have gotten us all to this point.
As the 16th living person in the world with TRMU mutation the future is uncertain but we know the future is promised to no one and we continue to enjoy each and every day, packing in as much love and making as many memories as we can. We have every reason to be hopeful for continued good health for Noah and we are so relieved and thankful to have Dr Hughes and all our team in Temple Street only ever a phone call away. The level of care and compassion they show is second to none.” Tracy, Noah’s Mum
Trick or Treat
Help support kids like Noah!
2022 means that our Ghoulish Trick or Treat campaign will be 22 years old this year and will once again be proudly supported by MiWadi. Imagine, all those years, our wonderful supporters have been donating to help sick children by doing something they love – dressing up and having a party.
Why not join in the Ghoulish fun and host a Halloween party in your crèche or school, your home or community or you can even have one in your office and raise funds for the sick children in CHI hospitals and urgent care centres at Crumlin, Temple Street, Tallaght and Connolly. Whatever way you do it, you can have some monstrous merriment that will change the lives of children like Noah.
