Hove mother's fight to get vulnerable son Covid-19 vaccine after a year shielding

Emma Lawrence from Hove is desperate for her son Noah, 13, to be vaccinated and is seeking answers on when the jab will be available for children under 16 with disabilities and clinical illnesses.

Noah was born with tracheal stenosis, a life-threatening condition which means his windpipe is very narrow, and coronavirus is a serious danger for him.

Despite his respiratory condition, Emma said that before the pandemic Noah was living a "completely normal life".

She said: "He had just started secondary school.

Noah, right, and his little brother Leo

"But all of his outside activities, like playing football with friends, have all stopped.

"He would normally be really sociable - even though he has a strict medical regime he would get up really early every day and go to meet friends at the school cafeteria, and have people round after school.

"But that's all gone. It's not actually a life, and it's horrendous."

The threat of Covid-19 means Emma, Noah and his younger brother Leo, 9, have all been at home since March 5 last year.

Emma said the isolation is having a great impact on her son's wellbeing.

She said: "He's changing as a person - he has no confidence any more.

"It's not an easy age anyway and it's a bleak and lonely existence for him.

"There are days when I'm just sitting at my desk crying because I don't know what to do."

Noah pictured before Covid-19. He has not been able to do any of the outdoor activities he loves for over a year

Emma contacted the Department of Health and Social Care and Minister for Covid Vaccine Deployment Nadhim Zahawi, but said the guidance is still unclear for how and when Noah could access the vaccine.

Currently the Joint Committee for Vaccination and Immunisation (JCVI) advises that only children "at very high risk of catching the virus, such as older children with severe neuro-disabilities in residential care" should be offered vaccination.

Deputy Chief Medical Officer Jonathan Van Tam said in January it would be possible "in exceptional circumstances" for children to receive the vaccine in an off-licence way, as a "carefully discussed, individual decision with the physician and the parents".

But Emma said this means her GP would be personally liable, and hospitals have refused to provide the vaccine off-licence.

She said: "The hospitals don't have the guidance to say they can do it.

"I would absolutely sign a disclaimer and it would be on my head - this is no life.

"What a dreadful choice to make parents face - I can let him out so he can have a life but be at risk, or carry on keeping him inside where he is safe from the virus.

Emma with her son Noah

"I just think children with disabilities and clinical illnesses have been forgotten. It's like we're returning to times before we were enlightened enough to treat them and instead they are annexed away. It's something that's out of sight, out of mind.

"It's horrifying for me. I can't keep telling him he matters when he says 'Mum, no-one cares'."

Hove MP Peter Kyle has raised the issue in Parliament and said Emma is paying a "desperately high price" to keep Noah and her family safe.

He said: "My team and I have been working really hard to get this resolved for Emma and her family.  

"People in his extreme position deserve special consideration at the very least and I expect authorities to work creatively and with humanity towards Noah and those few people with extreme vulnerability to Covid, but currently outside of the vaccination age range.

"I’m glad vaccine trials are ongoing now which will provide more definite answers and guidance. 

"It would be a cruel reward for all the sacrifices of Emma and Noah, to see neighbours heading to the pub with a swing in their step, if they have to remain indoors for any longer than is necessary."

Peter Kyle MP. Photo: Tony Wood

A survey by Contact, a charity for families with disabled children, found ten per cent of parents would like the vaccine for their children off-licence immediately, before trials have been completed for under-16s.

The charity is calling for clearer guidance about off-label use of the vaccine.

Amanda Batten, chief executive of Contact, said: “There are tens of thousands of children shielding across the country, with no roadmap out of lockdown.

“Families are exhausted and concerned about their child’s development after being out of school for so long.

“We have written to the Joint Committee on Vaccinations and Immunisation with our findings, asking for clarity on plans to roll out a vaccine for children and how those at highest risk will be prioritised once it’s licensed. Families are desperate for information.”

A Department of Health and Social Care spokesman said: “Almost all children with Covid-19 have no symptoms or only mild disease.

"For a very small number of children at a higher risk of catching the virus and serious illness, the Joint Committee for Vaccination and Immunisation (JCVI) have advised that vaccination can be appropriate.

“JCVI advise that this is a decision for doctors and clinicians to make on a case-by-case basis and should be a carefully discussed between a child’s parents or carers and their GP.”