Help Nasie Live Again

I have a condition so rare it has never been seen before anywhere in the world. My condition doesn't have a name just a "description"; Rectosigmoid Conjenital Lymphovascular Malformation, Cortical Venous Hypertension with Varices and Hypersplenism. In simpler terms this means I have an enlarged spleen which is growing 1cm a year which is caused by my portal hypertension (high blood pressure in my portal vein) which was caused by a blood clot that closed off one of the two branches within the portal vein. This blood clot was made by my original condition which is a vascular malformation which is (in my case) veins that are growing around and in/through my whole digestive system. As they are a growth there isn't room for them and they squash my organs. This causes a lot of pain and internal bleeding (they are also not protected so more prone to bleeding). In turn the bleeding causes all my blood levels to drop (my levels are as low as cancer patients and they can't fix them). My clotting factors get used up by my condition and spleen and this causes more bleeding. I have a high risk of haemorrhaging and have done so in the past.

In 2012 I lost many litres of blood while leaving hospital and was rushed to ICU. I'd been in hospital for over five months while they sent my specialists overseas to try find answers from international experts. I was in PICU and HDU in Starship Children's Hopsital and 15 at the time. We live three and a half hours away. I then underwent a 10 hour surgery to remove the malformation and get a temporary ileostomy and rebuild a part of my digestive system. I spent a further month in hospital in and out of PICU and HDU battling severe pain, nausea and medications to help manage my remaining condition and other issues. My ileostomy was successfully reversed four months later. Monthly surgeries followed for all of 2013 and slowly eased of throughout the next year. In 2015 my health began to deteriorate once again. It was discovered that the remaining malformation is growing. I am now facing another major surgery in which I am a high risk patient due to my tendency to bleed excessively. This surgery is on the 13th of April 2016. It is planned that the remaining malformation will be removed and they will create a permanent ileostomy. They are planning for complications within the surgery as they arose in the previous one. It is expected that I will be in ICU (now within the adult system) when I wake up which may not be the same day. I may need to be put into a medically induced coma.

As a result of my health my mum is my sole caregiver and cannot work as she fully supports me. I receive a supported living payment which is insufficient to cover my medical costs, my need for specialist foods and living costs. This adds an unnecessary pressure to my stress levels which further effects my health and slows down my recovery. As a result I am unable to socialise, fulfill any dreams or goals, ease my pain and live.

In order to look beyond the present, have something to look forward to after my surgery, aid my recovery and allow me the ability to support myself I would like to raise funds for equipment that would enable me to do so. This includes:

-A safe and reliable vehicle to get to and from hospital initially and then attend university.

-A laptop to help me complete my book (my story), study, follow my dreams and stay said while recovering.

-A camera to be able to capture this journey in photos for my book and to allow me to see the beauty within this hardship and then follow my dream to become a yoga teacher.

I had to leave school at 15 due to my health. Despite doing so I passed level 1 within the first term with excellence and some other papers (when my health allowed) with excellence in ncea level 3. I have taught myself yoga at home and taken a class already. I aim to qualify as a yoga teacher and study at university level towards my Bachelor of Exercise and Sport Science. Im already half way through writing my book and have released a yoga guide (ebook).

The reason I am wanting to raise fund for these three things is because when I was asked what would help me most in the world these were the things that would help me most and do so for many years. They would help me now, during surgery, recovery and afterwards. They would me get better and set myself up to feel like less of a burden to my family and society. They'd change my life forever allowing me to grow my shattered hope once again as I feel they would allow me to become independent and support myself in the future. By giving me hope I feel I'd be able to face this journey, because the way things are it feels impossible and I feel broken. The reality I live in right now is overwhelming. I look at my life and I think, is this it? I'm not living, I'm just existing and if I only live a short life I'd like to be able to make some difference and actually live the time I have. To do that I need help. I've fallen and I need you to take my hand and help me stand so I can continue to climb this mountain.