Boy with rare condition stopped from going to school as mum slams Covid-19 rule

A child with a rare condition will miss his first day at primary school because of coronavirus – despite being no more at risk than his classmates.

Ryan Henry-Macklin, 4, has Treacher-Collins Syndrome, a rare disorder which stops the bones in his face from forming properly.

He has been home from nursery since March and will now miss his first day of school due to coronavirus, the Mirror reports.

Ryan faces medical challenges as a result of his disorder everyday and they have left him with a small jaw and upper airway.

So that Ryan can breath properly, he has had a tracheostemy, which is a tube that has been inserted into his neck.

Ryan also wears a humidifier and a bib when he is out of the house – which means his breathing device is neatly contained when he clears it by coughing.

The four-year-old does not cough anymore than other children, but Government guidelines state coughing raise the risk of coronavirus infections.

Ryan's school in Cheshunt, Hertfordshire, also does not have a designated room where a carer can help adjust his device.

As a result, Ryan and others who have tracheostemies will not yet be able to go to school.

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Victoria, Ryan’s mum, told Mirror Online: "I want him there on the first day.

"He has a feeding tube, two hearing aids and he looks very different.

"He already has a lot to contend with.

"I want him to start on the day when his peers do so that he can build relationships.

"Those first few days are very important, especially for children like Ryan.

"He is very excited about going to school.

"He was only at nursery for a year and two months."

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Victoria has spoken to healthcare professions who have told her its safe for Ryan to go back to school without putting other children at risk.

Medics have said it is unlikely children with tracheostemies are more likely to spread the virus than their classmates.

They have also advised her that he is at no greater risk of suffering serious harm from the coronavirus than other children his age.

And yet, current regulations mean he will miss the crucial first months of his schooling career.

Ryan has even been given a de-shielding letter from Addenbrooke's hospital, meaning he has been cleared to go outside again.

Victoria said: "The letter says he is no more at risk than other children and is not a risk to others.

"Public Health England needs to find a way for these children to go to school rather than preventing them."

She has also started a petition to build pressure on the Government to change its guidelines and accommodate children who have had a tracheostemy.

To sign the petition, click here.

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