A MUM has spoken out about the “immense strain” of providing full-time care for her autistic daughter during the coronavirus pandemic.

Abi Smith, 15, who lives in Crawley, has autism and a severe heart condition called dilated cardiomyopathy, which causes her heart muscles to be extremely weakened and enlarged.

As a result, Abi uses a wheelchair and requires 24/7 care.

Her mum Emma said lockdown has been “incredibly tough” for her family because they have received little help to care for Abi and have taken their youngest daughter Roo out of school.

Emma said: “We have been almost continually shielding for over a year now.

“We made the decision to pull Roo out of school on March 13 as she became terrified of bringing Covid back into the house.

“The risk of Covid was too high for Abi and also for me as I have a history of severe asthma.”

Research by the Rainbow Trust, a charity that supports families that have a child with life-threatening illnesses, found than more than half of families it surveyed said their situation was worse than in the first national lockdown.

54 per cent of respondents said that their mental health was either “worse” or “much worse” than in March 2020.

Emma and her husband Tim said the latest lockdown has hit them the “hardest” as they have now been without respite for over a year.

“There has been almost no support for us during Covid – you get no mental health support as parents – just a pat-on-the-back and a “keep going”.

As a parent with a seriously ill child, you’re expected to carry on until you drop – and the pandemic has made it much harder.

“I’ve kept going because I’m a mum and I have to, but it’s my kids I feel so sorry for.

“The winter months made it dreadful with dark, wet days and battling to get home-schooling done on top of Abi’s care.

“She has really struggled as it’s not fair for a 15-year-old to be cooped up with her family continually. But being in a wheelchair she has no independence.

“For Roo at 14, she should be flourishing and gaining independence but she’s not able to.”

The family said they are “thankful” for the support they have received from the Rainbow Trust throughout the pandemic.

The charity is now calling on the government not to ignore families with a life-threatened child as restrictions start to lift.

To find out more visit rainbowtrust.org.uk/lockdown-survey