We want to raise money for Dewi to have the things we believe he deserves for his birthday in August, he wants a TV, Nintendo switch and a new bike.
He has had a turbulent time since his Acute Lymphoblastic Leukaemia diagnosis on 15/12/2015. We were told initially that we would be home for Christmas but unfortunately from there on it went horribly wrong. The Doctors in noahs ark hospital discovered a fungal growth in his right lung and they initially thought they'd have to remove the lung. Whilst they were still debating what to do about this problem, Dewi had his first visit to ICU for a gastric bleed in January 2016. Thankfully after 3 days of nil by mouth he recovered and then on 5th February he had a seizure and they did a brain scan and found that this fungal growth had caused 7 lesions in his brain, this then led to being his second visit to ICU. Seeing my son being kept alive by machines was heartbreaking and a picture I'll never forget! Further tests and biopsies showed he also had these lesions in his spleen and oesophagus thus being the reason he couldn't swallow food for a few months and relied on his NG tube. He was eventually discharged from hospital on 4th March 2016.
The fungal growths mean that since May 2016 he has had to attend hospital every Monday, Wednesday and Friday for specialist fungal IV drugs and this has meant he's missed lots of a normal childhood and has only returned to school in October 2016 and this is only for 2 days per week.
Due to the nature of his illnesses he's had numerous hospital admissions and it's an illness which has impacted his life dramatically and with everything else he has also been diagnosed with avascular necrosis in his left hip. This is just something we will have to keep an eye on and just hope that it will not get significantly worst as it will mean hip replacements when he's older.
So we are hoping also to take him on holiday at the end of his fungal treatment and he wishes to go to Disney World.