FROM daily seizures to less hours with nurses and carers, a family has opened up to the Journal about dealing with a child's rare condition during the Covid-19 lockdown.

12-year-old Noah Jerram, from Hindon, has suffered with STXBP1 from a young age - a condition combining epilepsy, severe learning difficulties and disability.

According to mother Emma, because of the condition Noah experiences drop seizures and is frequently rushed to hospital, and last year he was transferred to a specialist neurological unit in Southampton for nealy four months, after a prolonged seizure resulted in an induced coma.

Following his diagnosis, Noah has been supported by Salisbury District Hospital, Exeter House School and Julia's House, but coronavirus has resulted in changes to his usual routines.

Before its temporary closure Noah was a regular at children's hospice Julia's House, but over the last three months he has instead been visited by the charity's nurses wearing personal protective equipment, with what used to be six-hour sessions cut to three.

These nurses have helped Noah during the outbreak through tailored help with eating, safety, playing and keeping him happy and stimulated.

"[Noah] doesn't understand what is going on at the moment. He is missing out on social contact, interaction and he's not experiencing his fun outside the home which is so important to him," said Emma, who cares for Noah full time.

She added: "Covid-19 has had a huge impact, before we rarely had home sessions and always went to the hospice. People think it is a place of sadness but it isn’t like that, it is such a fun centre - the opportunities they give are brilliant.

“Julia’s House has always felt like a family, so that is what it feels like we’re missing. We’re missing family. Before Julia’s House, we had spent 10 years looking after Noah on our own and their support has made such a huge difference."

Emma said a "good day" for Noah would be if he had around six seizures, adding he has regularly been admitted to hospital during lockdown.

Each hospital trip has had to be followed by a fortnight of isolation, adhering to Government safety measures, meaning Noah has had even less time with hospice staff.

"It is so tricky because when he goes to hospital, they want to get children out as quickly as possible because of Covid-19, but then our support at home is eliminated," Emma added.

"Quality of life can be just awful, and sometimes [Noah] doesn't even have time to get over a seizure before the next fit.

"We are feeling very vulnerable as parents, we’re super vigilant and taking it in turns to check on Noah during the night. When he gets ill he goes down very quickly.

"We are tired as there is now no 'down time'. We just can’t leave Noah. All the nurses and carers have become part of the fabric of our lives, so not having them at the moment is very hard. The situation feels quite surreal."

Despite less time with the hospice, the mother-of-three said her family would be "devastated" without their support.

She added: "Even if we can get three hours it makes so much difference, with this we get smaller bits of freedom that others take for granted. I can then focus this time on my other children and dedicate time to them.

“I imagine that to others a few hours from Julia’s House every week may not seem a huge amount of time, but those few hours enable [husband] Chris and I to reconnect and just take a couple of hours to walk the dog or go for a bike ride.

"We have never had something like this before, it’s been a massive help. We know this illness could take Noah any day."