Duchenne’s possibility

Hi, This may be a bit long and hopefully not to confusing…..My sister’s 3rd child a boy aged 11months was seen by GP aged 8 months as was not reaching any motor milestones ie no crawling,rolling sitting generally very weak muscle tone, she initally suspected hyper flexibility and hypatonia and set up physiotherapy sessions…my sister pushed for a referral to a specialist had to wait 6 weeks for apt in that time he has come on very well with phsio now sitting and generally getting stronger, weak areas shoulders, hips legs, upper arms the physiotherapist is very happy with his progress after 6 sessions and we see improvements daily…..jump forward here… he had apt with specialist 4 days ago who also diagnosed hyper-flexibility and hypatonia and was’nt unduly concerned was happy for him to carry on with physio and bring him back in 3 months but would do a blood test in the meantime…….blood test came back with high levels of ck we don’t know how high, she arranged for him to have an EMG yesterday at Great Ormand Street….this came back as showing muscle disease.
So far this is all we know he is to have a muscle biopsy in 10 days and seeing another specialist (who is an expert in Duchenne’s)
my sister and brother-in law(all of us really) have been driving ourselves crazy looking up things on the internet they have convinced themselves because the specialist is an expert in duchene’s this is what he has(he is an specialist in muscular disease)
all the things i have read about duchennes seems to present it’s self slightly later, as a toddler i can’t find info in a child under 1 and wanted to know if this rings bells for anyone. It is the not knowing anything that is driving us all mad Thank you.