BiographyKyan was born full term but spent 5 days in SCBU due to grunting / wheezing at birth and for checks for GBS infection (his elder sister had this at birth) and high downs risk. He was given the all clear and we went home. Throughout his toddler stage he was forever in and out of hospital whenever he caught a cold due to being unable to breath and regulate his temperature.
At 18 months old on one of these admissions he was referred due to development delay, after many follow up apps and tests it was found Kyan had a interstatial deletion on chromosome 4. He is the only registered person with this exact deletion. His initial prognosis was mild learning disability - upon starting nursery this was changed to moderate learning disability and now it has been measured as severe learning disability. Kyan has anxiety, sensory issues that vary from day to day, he needs physio, speech therapy, occupational therapy work daily. We have just been informed his mobility problems are ataxic - his physio is currently looking into whether this is caused by his deletion or if he also has Cerebral Palsy caused by birth. He is incontinent and is still a far way off being toilet trained.
Everything is changing for Kyan we are currently fighting to get him into a special needs school so he can have a more pro-active input to further his speech etc. He also has viral wheezing and is currently having problems with nose bleeds so has to have cream everyday and may need his nose cauterising - throughout all this he keeps on smiling an for the majority of time is happy. He lights up everyone's life he contacts. Kyan adores Thomas the Tank engine, one of the many difficulties we have is that we can no longer buy him clothes with Thomas the Tank on. A side effect of the chromosome deletion is that he has a tall stature for his age.
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