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Four-year-old boy with rare genetic condition is told he can’t return to school

A four-year-old boy with a rare genetic disorder will not be permitted to attend school in September despite posing no greater risk than other children in catching and spreading Covid-19.

Victoria Henry-Macklin, 46, from Cheshunt, Hertfordshire, is calling on ministers to intervene after she was told her son Ryan Henry-Macklin, who has Treacher-Collins Syndrome, will not be able to start school next month due to his tracheostomy.

The congenital disorder, which causes craniofacial deformities, has left Ryan with a small upper jaw and upper airway which causes severe breathing problems and he  has had to have a tracheostomy- a tube inserted into his neck- as a result.

However as his primary school does not have a spare room for Ryan to have his device adjusted, in accordance with government guidelines, Victoria will have to keep her child at home. 

Desperate to give her son a chance at ‘normality’ and get him to school ‘on those crucial days’ Ryan’s mother, who also has Treacher-Collins Syndrome, has sent a letter to Education Secretary Gavin Williamson. 

Ryan Henry-Macklin, who has Treacher Collins Syndrome, will not be able to start school in September due to his tracheostomy

Ryan Henry-Macklin, who has Treacher Collins Syndrome, will not be able to start school in September due to his tracheostomy

The four-year-old (pictured playing the piano at St Pancras International Station) has a tracheostomy- a tube inserted into his neck- due to his small upper jaw and upper airway which causes severe breathing problems

The four-year-old (pictured playing the piano at St Pancras International Station) has a tracheostomy- a tube inserted into his neck- due to his small upper jaw and upper airway which causes severe breathing problems

The four-year-old (pictured playing the piano at St Pancras International Station) has a tracheostomy- a tube inserted into his neck- due to his small upper jaw and upper airway which causes severe breathing problems

Victoria (pictured with her son Ryan) is calling on the government to adjust the current guidelines preventing her son from starting Primary School

Victoria (pictured with her son Ryan) is calling on the government to adjust the current guidelines preventing her son from starting Primary School

Victoria (pictured with her son Ryan) is calling on the government to adjust the current guidelines preventing her son from starting Primary School 

She said: ‘I don’t know if anything will change, I don’t know if it will help but I can’t just sit back and just wait. It’s frustrating, it’s not just Ryan’s problem, it’s a problem for many parents. 

‘I’m on a forum on Facebook for parents of tracheostomy children and I saw that other people were having this issue and then I myself was told by Ryan’s school they probably couldn’t have him start in September because they don’t have a spare room.

‘I was almost waiting for it and since then you can see the parents have gone from disbelief to frustration and it’s starting to move towards anger. We feel we are being discriminated against and we’re thinking we can take our kids to soft play but we can’t go to school?

‘We’re seeing adults going to pubs and drinking and all the rules go out the window but we can’t take out children to school. 

‘The lack of thought and common sense that seems to have gone into it. What do school’s do if they don’t have this spare room to do these medical procedures in that would normally just be done there and then wherever the child is.’ 

Children with tracheostomies undergo a procedure called suctioning which removes mucus and secretions from the trachea however government guidelines suggest the act could up the risk of infections in the classroom.  

Victoria continued: ‘We’re so used to doing it that it’s just a normal part of our lives but it’s being treated as this contagious thing we have to do. 

‘It’s the equivalent of blowing your child’s nose. It’s only a problem if the child has Covid and the child is not likely to have Covid because they’ve all been shielding for five months.

Ryan's (pictured at his graduation from nursery) congenital disorder causes craniofacial deformities and has left him with a small upper jaw and upper airway

Ryan's (pictured at his graduation from nursery) congenital disorder causes craniofacial deformities and has left him with a small upper jaw and upper airway

Ryan’s (pictured at his graduation from nursery) congenital disorder causes craniofacial deformities and has left him with a small upper jaw and upper airway

The young boy was  just nine months old when his grandfather bought him his very first keyboard

The young boy was  just nine months old when his grandfather bought him his very first keyboard

The young boy was  just nine months old when his grandfather bought him his very first keyboard 

He was born premature at just 30 weeks and was soon transferred to Addenbrooke's Hospital in Cambridge where doctors realised that his tongue was occluding and carried out a tracheostomy

He was born premature at just 30 weeks and was soon transferred to Addenbrooke's Hospital in Cambridge where doctors realised that his tongue was occluding and carried out a tracheostomy

He was born premature at just 30 weeks and was soon transferred to Addenbrooke’s Hospital in Cambridge where doctors realised that his tongue was occluding and carried out a tracheostomy 

‘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 play dates, 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.

‘It doesn’t make sense to us. We can’t see why they’re any more of a risk to a normal child just coughing or sneezing at you.’

Ryan, who has a tracheostomy because his upper jaw is too small and could leave his tongue obstructing his airway, has received a de-shielding letter from Addenbrooke’s Hospital in Cambridge confirming he has been cleared to go outside.

Health professionals that Victoria has so far spoken to also feel the guidelines need to be more accommodating for children with tracheostomies and they should not be excluded from schools.  

His mother explained: ‘He hasn’t got any respiratory conditions, it’s just he breathes from his neck instead of his mouth. It’s just an artificial airway so in theory Covid shouldn’t affect him any more than a normal child.

‘In fact because his tracheostomy, is covered up with a humidifier and it will be covered up with two bibs when he is at school, if he coughs it’s not going anywhere, it will be contained. Whereas if a child without a tracheostomy coughs it’s going into the air.

‘All the consultants I have spoken to have said we think tracheostomy kids should be at school, we don’t think they should be excluded, we don’t think they pose more of a risk.’

The four-year-old also had a feeding tube inserted, which has since been replaced with a peg tube, and his cleft palate repaired after he was born

The four-year-old also had a feeding tube inserted, which has since been replaced with a peg tube, and his cleft palate repaired after he was born

The four-year-old also had a feeding tube inserted, which has since been replaced with a peg tube, and his cleft palate repaired after he was born

Ryan's mother (left) is now fighting for the guidelines to be adjusted so that her son can begin Primary School

Ryan's mother (left) is now fighting for the guidelines to be adjusted so that her son can begin Primary School

Ryan’s mother (left) is now fighting for the guidelines to be adjusted so that her son can begin Primary School

Victoria, who is now fighting for the guidelines to be adjusted so that her son can have a chance at an education, also explained that some schools simply didn’t have the space for an additional classroom.

She said: ‘We need the guidelines to be looked at and made more sensible or for Public Health England to acknowledge there’s no more risk from a child with a tracheostomy having their tracheostomy suctioned than a child coughing. 

‘In fact you’re in control of suctioning a tracheostomy, you can take them to a corner of the room if you have to.

‘Some of the comments I’ve had since starting the petition have been ”I can’t believe this is happening. I can’t believe you’re having to fight for your child to have an education”.’  

The mother continued: ‘A lot of schools might be small and they have classrooms and a library and a dining room but of course they’re going to be used. They don’t just have an empty room sitting there. 

‘If they do have a sick room or something similar that might be on the other side of the building.

‘With Ryan we don’t ever have to do a suction procedure as an emergency but some children might need suctioning immediately and you haven’t got time to walk five minutes down the corridor.

‘I think I’ve seen at least two cases where the school has said the child can go back to school but they’ll have to be kept in a separate room all day away from the rest of the children. So of course the parents have said ”well no thanks, I’m not having my child treated like he’s some contagious thing kept in a separate room.”

What is Treacher-Collins syndrome? 

Treacher-Collins syndrome (also known as mandibulofacial dysostosis) is a congenital condition that affects the bones and tissues in the face. 

The genetic condition is caused by a  mutation on specific genes which are responsible for the formation of proteins and which play an important role in how bone and tissue cells develop early in pregnancy.

The gene mutation can be passed on from parent to child but in many cases develops sporadically.  

Children with Treacher-Collins syndrome often have problems with their cheekbones, jaw and eye sockets forming. 

If the jaw is very small and/or underdeveloped, breathing  and feeding difficulties may become apparent soon after birth. 

The child may have to have a tracheostomy in order to help them breathe. 

The ears are often affected in children with Treacher-Collins syndrome, either being absent or very small (microtia).  

Source: Great Ormond Street Hospital 

‘What is that mentally going to do to that poor child to be excluded in that way? I would be the same if they said Ryan had to be completely isolated from everyone, there’s no point in sending him to school because he’s not getting that interaction and getting into that routine with all the other children.

‘He’s already different. I’ve already concerned about his first day at school with a load of kids who he doesn’t know, who have never seen him before and have probably never seen anyone with his condition, never seen a tracheostomy or a feeding tube. 

‘We’ve already got that to deal with but surely it’s better for him to be there on that first day than be there in two months or whenever he might start and him having to deal with being the new kid as well.

‘That’s really what I don’t want. It’s not just about getting him to school. It’s about getting him to school on those crucial days.’

With no indication of when her child will be able to begin school, Victoria feels time is running out for her son to be able to start school in just two weeks time.  

She continued: ‘I feel very stuck at the moment and it’s just so sad that I’m having to fight in this country for an education.’ 

Ryan was born premature at just 30 weeks after a major bleed caused Victoria to have an emergency Caesarean.    

Her son was soon transferred to Addenbrooke’s Hospital where doctors realised that his tongue was occluding and carried out a tracheostomy when he was just three months old. 

Doctors also inserted a feeding tube, which has since been replaced with a peg tube, and repaired Ryan’s cleft palate.

Despite his many medical procedures, Victoria explained that her son ‘takes it all in his stride.’

She said: ‘He takes it all in his stride. He’s a very happy lovely little chap. Despite all the medical difficulties.

‘We have a lot of hospital appointments, speech and language, hearing aid appointments and appointments about his tracheostomy. 

‘You have to order all these supplies and equipment to manage this tracheostomy and feeding tube so we’re constantly busy. That’s why school is so important because it’s a bit of normality for him.’

When Ryan was just nine months old, his grandfather bought him his very first keyboard and his love for music continued to grow ever since.

Victoria said: ‘Ever since then he’s been playing and jamming and then for his third birthday my dad bought him another keyboard and he loved it.

‘We bought him a drum kit when he was three because he seemed to be showing some ability and I thought that’s really good. Rather than just picking up the sticks and wacking it he was actually playing rhythms. He can beat along to a song, there is definitely something there.

The  2017 Wonder, starring Julia Roberts, Owen Wilson and Jacob Tremblay, followed ten-year-old Auggie who had Treacher-Collins Syndrome

The  2017 Wonder, starring Julia Roberts, Owen Wilson and Jacob Tremblay, followed ten-year-old Auggie who had Treacher-Collins Syndrome

The  2017 Wonder, starring Julia Roberts, Owen Wilson and Jacob Tremblay, followed ten-year-old Auggie who had Treacher-Collins Syndrome

‘Considering he wears two gearing aids he seems to have perfect pitch. He can immediately identify a note when heating it.’

In 2017, director Stephen Chbosky shone a light on Treacher-Collins Syndrome in his film Wonder.

The film, starring Julia Roberts, Owen Wilson and Jacob Tremblay, followed ten-year-old Auggie as he began school and tried to navigate his way through life while living with the congenital disorder. 

To sign Victoria’s petition visit: https://www.change.org/

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