My name is Karina. I am married to an amazing human, Shaun and together we have 3 beautiful boys, Kieran 11, Noel 5 and Rueben is 3. In the month of December after a difficult and traumatic birth, i gave to birth to our 2nd son, Noel. Noel spent a week in NICU before he was allowed home. In the weeks to follow, Noel undergone a whole bunch of tests to see why he had low muscle tone, poor feeding and not thriving.
Om March 3rd 2014 we recieved a phonecall no parent wants, Noel was diagnosed with Prader-Willi Syndrome. My husband took the call from Noel's peadatrician. Shaun hung up and he burst into tears. We had not heard of PWS prior to this and we googled. Reading about it just filled me dread and pain. I struggled with coming to terms with Noel's life long syndrome, suffering from depression and grief.
Then it hit me, moping about was not going to fix this. We decided to be proactive. We will do anything and everything for our Noel, no matter what. We want Noel to grow having a normal childhood and not being treated any differently than his siblings. Noel is now a thriving 5 year old. He attends main stream school, he may be behind his peers but makes up for it with his charisma and the ability to talk to everyone. He has made some lovely friends and loves school so much. He is intelligent enjoying maths, english and his writing is great for his age. He can count too 100, complete a 50 piece puzzle in 10 minutes and recite the alphabet. Noel never lets his PWS get in his way. He is my very own super hero, and has shaped me to be the person i am today. He is my 1 in 25,000 and i would not change that for the world.
We are hosting this charity ball to raise awareness for PWS and to fundraise for our charity PWSA. You can purchase tickets through this website.