Shae-John’s quilt arrived today.
Wow! Shae was lost for words, he’s absolutely thrilled and was super amazed that so many lovely people from all over the world, put so much effort into making him such a special quilt and even the card was stitched too. Shae has asked me to thank each and everyone from him, as he read all your names and locations one by one. Also to Heather for also putting it all together too. From our family to all at Love Quilts UK, Thank you for such a special gift that I know will bring my boy so much comfort and happiness throughout the life challenges he faces ahead.
At 12 days old Shae-John became severely unwell where he lost over 18% of his birth weight and was rushed into ICU. Thankfully his life was saved. He underwent surgery at 6 months old and remained on preventative antibiotics, however he was again admitted into hospital again in 2013 where he needed urgent care again. Once home he remained on the antibiotics for a number of years in hope that he would ‘outgrow’ his condition. Sadly there has been no change and has still remained under the fantastic care of his Nephrologists ever since.
Throughout Shae-John's life he has faced many more battles too which have brought daily struggles for him. Shae-John shown many signs very early on (around 6months). He was late sitting up, would gaze at lights but wouldn’t give eye contact, head banging, army crawled, was late walking and non-verbal until age 5, wasn’t toilet trained until age 5/6, suffered reflex anoxic seizures, meltdowns.
Following that Shae-John has struggled to cope daily in the world around him leading to frequent falls, injuries, meltdowns, self harm, sensory processing, nursery/mainstream school, been bullied, school changes, forming friendships and relationships, school work, EBSA, interceptions.
After many years of fighting for help and support for he has now received multiple diagnoses. After a long court battle Shae-John is now at a specialist secondary provision and is struggling so much. He was sadly bullied not long after starting there. I have managed to get lots of extra support into his EHCP however it’s a daily battle. I have had to re refer him to a specialist to try meds trial due to self harming and meltdowns really draining him.
Shae-John is an absolutely amazing, intelligent, extremely funny young man and I will try everything to help him shine and give him the happiness he deserves.