Vici Richardson, mum to Zak, has written about their experiences:

Since the Duchenne diagnosis 16 years ago I have advocated for inclusion for Zak, advocated for him to have support to be able to live his best life. We have worked hard to ensure he is not isolated, segregated and written off because of his diagnosis. There have been many battles along the way, many tears but also many victories and a lot, a lot of joy. We have lived with the attitude of making the most of the time, ensuring he can do as much as he can whilst he can. Living under the shadow of a life limiting, time ticking condition makes you want to make memories and live life. We always have in the back of our mind that we don’t know when this would be the last Christmas , last birthday, last holiday.

We can not relax and think it’s ok we will always have next summer or we can do this another time.  We may not have that time.

So to have to shield, isolate for 12 weeks or more is not what we want to hear or do. We have memories to make, he has a life to live and this feels like wasting time. Time that he does not have to waste.

We are hearing and reading words that I would never describe him with words such as vulnerable, shielded, isolated. Apparently these are all now positive things because it’s for his safety.

Over the last few years a lot of work has been done with him in developing his independence. He would go to the shop himself, go out and about in our local community, visit his Grandma. I worry that these months of being shielded are going to erode that much fought for independence.

We have discussed with him the risks of going to shops and of having some of his PAs back he’s understanding of this and he’s a lot happier now he is not confined to the house and has had some socially distanced visits from his PAs.

His diagnosis has never confined him and we are working hard to ensure that this situation will not confine him. This means using some creativity to ensure he stays safe. Late night trip to the beach, off road walk through the cornfields to avoid the busy paths, treasure hunt car drives and PAs delivering kebabs through the gate. His support planner is doing his person centred support plan via WhatsApp and we have taken a delivery of new slings with the handover done via a zoom type app with the OT!

He has done lots of facetime calling, playing online, as well as takeaways and Amazon shopping. That’s all still making new memories and making the most of life anyway right ?

You can read more from Vici in her blog: https://vicilou.wordpress.com/2020/05/30/my-5-covid-19-tests-whilst-shielding-staying-sane-and-protecting-my-vulnerable-one/