Georgina, mum to Connor, talks about their lockdown experience:

I saw coronavirus coming closer and closer towards the UK and its effects it was having on other countries. We had a summer holiday booked beginning of March to make more memories for Connor who has Duchenne. We debated about cancelling but decided to go ahead taking all precautions. We arrived home, both the boys went to school for 1 day then I pulled them both out again. We all locked in! Two boys, two parents, two elderly grand parents and two dogs...no one in, no one out! 

This is when life changed for us and here we are currently on day 91, I think??!! 

No shopping, no stock piling and no wages coming in but like everyone still plenty of bills to pay.

We've missed so much, family parties, nights out, Duchenne days out. The husbands 40th birthday holiday, parents evenings. A year 6 school camping trip, end of schools leaving parties, saying goodbye to school friends, leavers photos, graduations, a hired hummer limo, vital appointments plus much more.

I feel gutted, were suppose to be making precious memories as a family with a child that has a life limiting condition. Instead we're locked down and shielding.

Lock down life has been hard, trying to organise this new life, a new 'normal' and heavily relying on others to help us out.

Trying to keep everyone focused, motivated, moving and marching. I always refer to myself as the captain of this ship of six and I absolutely refuse to let it sink.

It's such a crap roller coaster ride, ups and downs, feelings and emotions. 

Financially we're pretty screwed. My self employed husband had to wait months for a self-employment grant. He even had to leave us all here for a week while he stayed at a friends enabling him to bring some money in. He will be doing the same again in a few more weeks’ time. The boys missed him so much with tears every day for daddy. After working, isolating and a negative Corona test he was able to come home. 

Connors condition is deteriorating with lack of exercise, hydrotherapy, swimming lessons and appointments etc. We are doing all we can but after finally getting out of lockdown whenever that may be, I'm not sure he'll still be able to walk after this. He’s concerned of going back to a new secondary school, what his friends etc. will think of him if he’s confined to a wheel chair. I'm thinking home schooling could well be more of an option now for him.

We've had a few new health issues and diagnoses whilst in lock down. Some in our home and other family members outside. That’s been quite hard to deal with emotionally and mentally plus not being able to physically be there when the need us.

We're all still readjusting daily but all still trying to rock it and go with the flow. Trying to keep everyone entertained so we’ve had lock down birthday parties, a VE garden party, home made McDonalds, a garden camping trip and a Christmas so far.

I really can’t see an end in sight right now for families like ours with vunerables (or our 3 valuables as we call them). Starting to see the world opening up around us and pass us by right now which is hard and feeling Connors life and time is running out and less memories to be made, its not how I visualised the memories to be at all but I'll continue to plod on through as healthy and happy as possible.