On behalf of Riley, my family would like to say thank you so much to each and every person who put so much hard work in to Riley's quilt! It is simply beautiful, he absolutely loves it!!! He was so.excited when he opened it and he cannot stop looking at all his favourite characters! As a stitcher myself I know exactly the hours and hours that go in to each square and this is something he will treasure. Again, a huge thank you to all you ladies and to Judith for a wonderful job of bringing it all together and building his quilt. Lots of love, Riley and family xxxx
We are extremely sad to hear of Riley's passing in October 2018 :(
When Riley was born I noticed that he was struggling to feed and had a severe cough, he was treated with antibiotics from birth for Strep B, he was diagnosed with a lung infection and we remained in hospital for 10 days. It was during this time the midwife said his chest murmur had not gone and he would need an echo. When Riley was 3 weeks old he was diagnosed with Tetralogy of Fallots (a severe complex heart condition with four main problems around his heart). Suddenly everything changed, I knew Riley had problems but nothing prepares you to hear those words and know your child would have to undergo Open-heart surgery.
When Riley was 6 weeks old he was rushed into hospital with RSV infection, we were told if we hadn't acted so fast, he wouldn't have made the night. He was so poorly. The first 12 months of his life were spent in and out of hospital to support his breathing and have oxygen as he could not fight anything off. He was put on Beta-blockers at 6 months old. Riley struggled to thrive, had a couple of ounces of milk every 2 hours and could not swallow solids before he was One. He could not sit unsupported, stand, crawl or walk until he turned 18 months old.
At 12 months old, he underwent Open-heart surgery. The surgery went well, however before he left hospital, he caught an infection. His wound had to be re-opened several times and he spent a further 10 days having I.V antibiotics. Again, this put back his eating, his physical movement and more time away from his 2 siblings. Riley's ribcage became deformed after surgery, which will require surgery to correct, he also has a leaking Pulmonary Valve which will require more O/H surgery in the future. His heart is "patched" but will never be "normal". Riley has 6 monthly cardiac checks to monitor his heart.
Riley has Global Development Delay, despite being 2 and a half, his development is over a year behind. He is on the A.S.D scale and needs to undergo tests for Celiac Disease. He is on inhaleres for his Asthma and creams for his Eczema.
Riley does not attend nursery due to his poor health, his A.S.D and his care needs, however we have play therapy sessions at our support centre and he enjoys sensory swimming when his health permits.
Despite everything Riley has been through, he is never without a smile, he loves life and faces every challenge life throws him. The future is uncertain but we feel so blessed to have our amazing little boy xxx