4-Year-Old With Rare Genetic Disorder Can’t Go Back to School Because "He Might Spread COVID-19"
Ryan Henry-Macklin, who has a rare genetic disorder, is told he could not go back to school amid apprehensions he may likely spread COVID-19, even though his mother already said he is not at higher risk than any other child.
Four-year-old boy, Ryan Henry-Macklin, who has a rare genetic disorder, is told he could not go back to school amid apprehensions he might likely spread COVID-19, even though his mother already said he is not at higher risk than any other child.
His mother, Victoria Henry-Macklin, has called on ministers to get involved after she was informed that her son, who is suffering from Treacher-Collins Syndrome, won't be able to go back to school this September because of his tracheostomy.
According to reports, Ryan's congenital disorder has left him with a small upper jaw and upper airway, which leads to serious breathing problems. As a result, the boy has had to undergo a tracheostomy, a tube inserted into his neck.
Nonetheless, as his primary school, does not have an extra room for him to adjust his device, in compliance with the government guidelines, Victoria will have to let her child stay at home.
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Mother, also with Treacher-Collins Syndrome, Desperate to Provide Her Son a Normal Life
To have him go to school, Victoria, who has a Treacher-Collins Syndrome, is desperate to provide her son with a normal life.
As such, she sent the Education Secretary Gavin Williamson a letter, although she said she doesn't know if anything would change. She said she doesn't know either if the letter would help, "but I can't just sit back and just wait."
It frustrates her, Victoria shared, to see not just her son's problem, but the problem of many other parents, too. At present, she is on a Facebook forum for parents of children who had undergone tracheostomy.
With the forum, Victoria said she saw that other parents had this issue as well, and then, she was told by her son's school they probably could not have him back there next month as they did not have a spare room. Such news gave Victoria a feeling of discrimination.
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A Child with Tracheostomy
Ryan is one of the many children with a tracheostomy who goes through a suctioning procedure, removing secretions and mucus from the trachea. But then, the government guidelines propose the practice could increase the danger of contagions in the classroom.
Victoria said she and the other parents of children with this genetic rare genetic condition are already so used to doing the suction, and it has been a part of their lives.
She added that while it's normal for them, the only problem is that, if the child has COVID-19 and the child is not able to get infected with the illness, they have all been protected for five months.
Victoria expressed her dismay on the situation: "So the fact that we're being seen as a risk to the other children in the class when those other children have probably been back to nursery, they've been mixing, they've been on playdates, going to places like parks and soft play. Ours have been stuck at home because we've been too scared to let them out, and yet they're the ones who are being excluded and being seen as a risk to the other children."
Victoria emphasized that their kids have stayed home since they were so scared to allow them to be out, and yet, they are the ones being excluded and regarded as a threat to other kids.
De-Shielding Letter from the Hospital
Ryan, who has tracheostomy because of his very small upper jaw, and could result in his tongue to block his airway, has been cleared by the Addenbrooke's Hospital in Cambridge through a de-shielding letter sent to him, to confirm that he indeed, is cleared to go outside.
The health professionals Ryan's mom has spoken to so far have shared the same feeling as Victoria's saying. The government's guidelines should be more accommodating for children that have tracheostomies and that their schools should not exclude them.
Ryan's case, his mom explained, is not any kind of respiratory condition. She added it's just that, her son is breathing from his neck rather than his mouth.
It is only an artificial airway the concerned mom said, and thus, in theory, COVID-19 should not impact him any more than an ordinary child.
And since tracheostomy is enclosed with a humidifier, not to mention the two bibs it will also be covered up with when at school if ever he coughs, "it is not going anywhere, and it will be contained," explained Victoria. This is while comparing it with if a healthy child coughs, it is definitely going into the air.
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Check out more news and information on Treacher-Collins Syndrome on MD News Daily.
Aug 18, 2020 04:20 AM EDT
