Naoise was born on December 25th @ 12:09pm in the Coombe Hospital - the best Christmas present one could ever ask for. Naoise was 9 weeks early and spent the next 8 weeks in intensive care until she came home in February.
Naoise lives up to her name which literally means brave, courageous, splendid warrior. She is a natural nurturer and giver. Her constant positivity keeps us all going when times are tough. She has a tremendous amount of patience and her sense of that fun that knows no bounds. She always has a smile on her face and is a delight to everybody that spends time in her company. All was well until she was about 3 years old; from then on she kept getting constant colds, sore throats, coughs and general infections. At first, we thought it was just her getting used to school and mingling with other little people, but after a year or so of constant illness, our GP sent Naoise for some blood tests. From here on, things started to get difficult for Naoise, the blood tests followed by a long wait resulting in Naoise being diagnosed in ALPS - Autoimmune Lymphoproliferative Syndrome. More information on ALPS can be found here http://www3.niaid.nih.gov/topics/ALPS/ . Then 3 years ago, while on holidays Naoise started experiencing a pain in her neck which then moved to her arms, legs, knees, hips, ankles, in fact it affected all her joints to one degree or another. This was shortly diagnosed as JIA Juvenile Idiopathic Arthritis, more information on this can be found here
http://www.ccaa.org.uk/jia_explained.htmWhile the ALPS has had a profound impact on her life her arthritis is at times utterly debilitating. She is in constant pain and sometimes every day life, like getting dressed and even going downstairs can prove extremely difficult. Naoise missed out on a lot of activities that most kids get to do like riding a bike, going on roller skates, skipping etc.. Two years ago she had to stop her ballet and yoga classes as her arthritis worsened. However being the positive girl she is she decided to replace these classes with guitar and art classes. Naoise can no longer walk for more than 10 minutes and gets so bad she has to use a wheelchair for everyday tasks like grocery shopping. Naoise attends Temple Street Hospital www.cuh.ie for regular transfusions, in fact she attends every second week, one day for treatment for her ALPS and the other day for treatment for her arthritis.
Over the years the doctors managed to get the ALPS under control with regular medication, however the arthritis has never responded to any form of medication and there certainly was a lot of medication. Naoise’s life was greatly impacted by all of this.
Naoise is going to the UK for a bone marrow transplant in February this will be her biggest adventure to date !!!.
