17 year old Marley and his family are currently still receiving Julia's House care at home. His mum Amy tells us how they're coping with lockdown...
Marley really misses his friends more than anything. He was used to having one of his friends over for the weekend every other week and seeing everyone at college every day. It’s very different now and quite isolating for him - talking to everyone on a screen just isn’t the same. He also misses his grandparents as he used to see them quite often and now can only talk to them on Facetime. It’s been very hard for him.
He loved the routine of going to college, so that has all changed. He is studying at home but for Marley college was a lot about life and social skills, so he has lost the benefit of those. I’m trying to find little jobs for him to do to keep him busy and have even bought him a paper shredder to help keep him occupied.
Marley's lego self portrait - one of the activities which has been keeping him occupied
Marley isn’t classed as high risk but we do have a carer coming in every day as he has an IV feed following a gastrostomy. We’ve had some hospital appointments cancelled or changed into telephone appointments - we’ve got a call with Great Ormond Street next week. I was a bit worried about his pacemaker but they can adjust that remotely if needed, so that was a relief.
As he isn’t getting out to see his friends, the social and mental stimulation from the Julia’s House visits make a world of difference to him – they’re a lifeline. The nurses and carers are coming twice a week, taking all the required infection control precautions, and Marley gets on so well with them. He really enjoys having their company and they take him out in his chair for exercise and fresh air as he has limited vision and mobility so can’t go out on his own. We’ve had support from Julia’s House since Marley was 12 – they were the first people we called! - so they’ve been a big part of our lives and are really helping Marley get through the COVID-19 lockdown.
Marley enjoying a singalong with nurse Natalie
Marley is 17 now so does need his own space and independence, which is why the interaction at college was so important. We’ve just finished an extension at home for him that gives him his own room and bathroom and his own back door, so he and his carers can come and go independently. We are future-proofing for him although of course, he can’t make the most of that opportunity right now.
We just hope Marley stays well so we can avoid any hospital visits when the NHS is under such a lot of strain and potentially where there would be an infection risk for him. For Marley, he’s just like any other 17 year old, wanting to get back to college and his social life as soon as he possibly can.