All the paperwork (& there is a lot) from GOSH means appointments or calls with GPs. A letter from GOSH comes with actions to complete by the medical profession, soon followed by another from the GP telling me I need to book an appointment….easy as that!

So in my first time of being a Duchenne mum needing a GP appointment I make a start…..I couldn’t get an appointment online, I telephone too and tried to get an appointment, apparently none are available – so the stress of it all just made me cry.

The lady on the phone finally gave me an appointment.

I’m fed up of crying now, I want strong Jo back.

Going to see the GP, explaining it all, amid tears, was not easy. I don’t want to re-hash all the details every time I see someone, but I’ve started to realise that is my job now as a Duchenne mum.

I need this to be easier for me. I can’t keep getting this upset every time I get a letter followed by another letter – they definitely won’t stop coming!

GP was nice in an old man kind of way. I cried… again! He gave me a named doctor, he gave me an email, he made just that little bit of my life easier for the future, hopefully.

I was leaving the room – he told me ‘chin up’! Luckily for him I didn’t reply – seriously ‘chin up’!!!

Next Appointment – Blood tests!

More tests, we take his new stethoscope so he can play doctor and off we go to QE2 this time.

It takes 20 minutes to find a vein, but does my boy cry – no! He hangs on in there and she finally gets the blood. Now if that were any adult I know they would’ve been off work with all the pain and anguish!

Next Appointment – Immunisations this time!

Off we go again to the GP surgery to see the nurse. The condition (DMD) is high risk therefore it means more injections.

Does he cry, does he moan? No, he’s strong and chats away to the nurse.

I don’t know how my boy does it, God I am so proud of him.