Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The date is chosen because in leap years it is February 29, the rarest date. The European Organisation for Rare Diseases established the day in 2008 to raise awareness for unknown or overlooked illnesses. According to that organization, treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families; furthermore, while there were already numerous days dedicated to individuals with specific diseases, there had previously not been a day for representing those affected by rare diseases. In 2009, Rare Disease Day went global as the National Organization for Rare Disorders mobilized 200 rare disease patient advocacy organizations in the United States while organizations in China, Australia, Taiwan, and Latin America also lead efforts in their respective countries to coordinate activities and promote the day.
All the boys & girls at the Convent of Mercy Nursery School have super powers such as being a great friend, caring for each other when one of their friends miss their mummy or daddy or hurt themselves during the day, it might be helping at home to look after a brother or sister or helping to cheer up a family member with a super hug or a beautiful song.
This year we have a friend called Cadáin who has an extra super power, the power of bravery! Cadáin has a condition called Mitochondrial Disease which is a rare genetic disease that affects the energy in his body. Mitochondria are the 'power stations' of cells and when cells lack energy, organs and tissues cannot function properly.
Cadáins blood sugars and keytone levels have to be monitored closely, as if there are any issues with these levels he requires special medication and hospital treatment. Cadáin cannot fight illnesses on his own due to mitochondrial as he does not have any reserves in his body. Cadáin has a fast period of no more than 10 hours, therefore his mummy has to give him a bottle of milk during the night to keep his blood sugars and keytones within a safe range.
Due to this disease Cadáin also has heart problems and high blood pressure which he has to take medication for daily. Cadáin is on antibiotics and inhalers, the antibiotics are long term 3 days a week to try prevent him from catching certain illnesses that will make him sick as he also has chest problems. Cadáin has recently started growth hormone injections to help him grow, he gets these every evening and he is such a brave boy as he knows that they make him big, tall and STRONG!
On Friday we invite all the boys & girls to wear odd shoes & stripy socks and ask that you make a minimal donation of £1 or more if you would like. All funds will go to Little Heroes - The Charity for The Royal Belfast Hospital for Sick Children.
https://littleheroesni.org/
