Mom slams coronavirus rule preventing her son with rare disease from going to school

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A young boy with a rare disease will miss his first day of elementary school although he is no more at risk for Covid-19 than his classmates.Like most children, Ryan Henry-Macklin has been home from nursery since March.

But unlike most children, the four-year-old suffers from Treacher-Collins syndrome, a disorder that prevents the bones in his face from forming properly.

The condition was brought to light by the 2017 hit movie Wonder.

In the film, Jacob Tremblay stars alongside Julia Roberts and Owen Wilson as Auggie, a character with Treacher-Collins who covers his face while wearing a space helmet.



The condition means the face in Ryan’s bones didn’t form properly

Ryan doesn’t hide from the world the same way, but he has serious medical issues.

Ryan’s small jaw and upper airways mean his tongue could block his airway at any time, causing him to choke to death.

In order for Ryan to breathe properly, he had a tracheotemia, a tube that was inserted into his neck.

When he’s out of the house, he wears a humidifier and a bib, which means his breathing apparatus is well contained when he coughs clean it.



Victoria fears Ryan will be left behind if he doesn’t start school soon



Jacob Tremblay in Wonder
Jacob Tremblay in Wonder

Despite Ryan’s coughing more than other children, government guidelines suggest the act could increase the risk of coronavirus infections in the classroom.

To complicate matters further, Ryan’s school in Cheshunt, Hertfordshire does not have a designated room where a caregiver can help adjust their device.

As a result, the young boy and the others with tracheostemias had no idea when he could start big school.



The four-year-old was due to start reception in September
The four-year-old was due to start reception in September

“I want him there on day one,” his mother Victoria told Mirror Online.

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

“He already has a lot to do.

“I want him to start the day his peers do so he can bond. “



Ryan celebrates his first birthday
Ryan celebrates his first birthday

Victoria spoke to many healthcare professionals who don’t think children with tracheostomies are more likely to spread the virus than their classmates.

They told him it was safe for Ryan, an avid pianist, to go back to school.

They told him he was no more likely to suffer severe damage from the coronavirus than other children his age.

And yet, the current regulations make him miss the crucial first months of his school career.



Ryan likes to play the piano
Ryan likes to play the piano

“Those early days are very important, especially for kids like Ryan,” Victoria continued.

“He is very excited to go to school.

“He only went to nursery for a year and two months. “



Victoria wants Ryan to have the best chance of fitting in with her classmates
Victoria wants Ryan to have the best chance of fitting in with her classmates

Recently, Ryan received a letter of protection from Addenbrooke’s Hospital, which means he has been cleared out again.

Victoria added: “The letter says he is no more at risk than other children and does not pose a risk to others.

“Public Health England must find a way for these children to go to school rather than preventing them. ”

Victoria, who also has the genetic condition and suffered from taunts from classmates about her appearance, wrote a letter to Education Secretary Gavin Williamson asking for his help.

She also started a petition to pressure the government to change its guidelines and accommodate children who have had tracheotemia.

To sign the petition, click here.

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