EDITOR – Dylan’s appointment with the specialist in Cape Town went really well because we have been given quite a substantial amount of information, and a lot of our questions were answered.
Prof Brink said that Dylan is still too young to undergo the surgery but has confirmed he does have HOCM. He said that usually around puberty they operate to cut back on the heart as he is too small and weak now for such a huge operation. He has however given us the go-ahead for anesthesia under supervision of a paediatric heart cardiologist and said that we can sort out his complications for his legs, tongue and ears, which we will, however, do in stages.
He also said he will run another very rare test to Italy to test our genes and DNA to try figure out where the disease came from.
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So we got good news but are still back to the waiting game and just have to monitor him for now until it’s time to operate. It’s given us huge closure and we are so grateful for the support everyone has given us and those who made this possible.
We have still got funds left which we are going to use to do his ears and legs, his main cause of pain and suffering, for now, and will then give him a bit of a break and let him be a boy for once and have fun.
Thank you again for the huge support.
Billie-Jean Kilian
Carrington Heights
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