TYLER
Tyler smiling into the camera during his photoshoot in 2023 - all photographs by Ceridwen Hughes
At the young age of between 16 to 17 months old, Tyler was diagnosed with the rare disease Ectodermal Dysplasia (ED). His mother, Chantelle, spoke to us about Tyler’s joyous personality and the one-of-a-kind connections he creates with those who get to know him. Despite questioning from other children and adults regarding Tyler’s condition, he remains a positive and inspiring character to those around him.
“He's a character, he's bubbly, everybody who meets him absolutely loves him because they just say he’s different to any other kid they've met. He just plods on with life, even when there's kids that notice he’s different, he's just not bothered. Just a really happy little boy, he's stronger than me, that kid.”
Ectodermal Dysplasia is a disorder that affects individuals’ skin, sweat glands, hair, teeth, and nails. It can also result in dental issues, such as a cleft lip or palate. As well as this, it has major effects on one’s immune system.
“He was about 16–17-months-old, it all came from going to a dermatologist appointment and the dermatologist was asking me questions because he had rashes around his face, and he noticed he didn't have any teeth. So, he asked me ‘does he sweat?’ He was looking at his nails, looking at his hair. So, then I booked an appointment at the doctors, explained what I thought and then they referred us to see genetics.”
“We went to the clinic, and he got clinically diagnosed, and then we had blood tests, which took around 6 months to come back. So, it might have been less than a year after we had the initial thought of him having ectodermal dysplasia. And then they tested me as well, and I'm a carrier of ED.”
After researching his symptoms on the internet, Chantelle was determined to get an official diagnosis for Tyler’s condition, in order to understand how to best raise, care and support him. Chantelle explains the emotional and physical challenges associated with coming to terms with Tyler’s diagnoses.
“I was devastated to be honest. You don't expect your child to have, not something wrong with them, but something that’s just not right, it took me awhile. But as time's gone on you learn to cope with it and deal with it. It's at this age now where it's starting to deal with other children seeing him, because they've not seen it before, so I understand why they look and stare. And then there's adults doing it as well. But, at that moment I was just devastated.”
Chantelle explains the dangers associated with Tyler’s dental issues, being that he only has 3 teeth. With this, especially at Tyler’s young age, comes the possibility of choking on food if not properly watched.
Tyler laughing during his photoshoot
“Food wise, with him only having 3 front teeth, he struggles to eat certain foods. He's choked on food and there was one time where I didn't think I could get it back up, and I just panicked. I know you're not supposed to put your fingers down the throat, but I didn't know what else to do, and when he got it out I was so relived. It was just horrible.”
"I think he seems to be an expert at eating these days. I'm there panicking like ‘don't put too much in your mouth’ and he's like ‘I'm not, I'm being careful’ but it just takes that one time.”
Chantelle wants Tyler’s future regarding his teeth to be left up to him. He is ultimately in control of his own person and body, therefore when he is at an age to make those important decisions, such as getting dentures, Chantelle will support him through that journey.
“The future with his teeth, that's up to him. I'm leaving the decisions down to Tyler, it's his body, it's his teeth, it's his mouth. If he wants to have dentures when he's older then we'll go through that process, but he's not ready, we're not going to force anything on him. He's his own person and he'll do it when he's ready.”
Ectodermal Dysplasia also significantly affects individuals’ ability to cope with different weather conditions. This is called impaired temperature control. It includes a reduced ability to sweat during hotter days, as well as problems maintaining adequate body temperature, such as during colder days. This overheating and overcooling can result in dangerous effects if an individual is not properly monitored.
“It affects him every day, like in the winter I don't take him out to play in the snow or anything because I'm worried it'll make him poorly. When he was about 5, he got diagnosed with asthma. He was in hospital every year of his life with infections and lower respiratory infections. In summer he struggles to go out because it's too hot, he might be out for half an hour before he's back in the house. He must have water with him all the time to keep himself hydrated because obviously he can’t regulate his temperature.”
Chantelle has been heavily supported by the Ectodermal Dysplasia Society, who are “dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia. They work together with people who have ED, their families, researchers, health and other professionals to develop and share expertise, increase awareness and understanding, and assist with the day-to-day management of ED.”
Ultimately, Tyler loves his life, family and self. Despite the challenging condition that affects him daily, he retains a wondrous outlook on life, which he moves through with curiosity and confidence.
“It's just normal for Tyler. He just goes along in life, but I'm worrying that when he gets older, he'll realise that people may be making fun of him and I'm worried that that's going to knock his confidence down. But I'm hoping that he'll just be like ‘I don't care what you’re saying, I love me’ because that's what he's like now, and I'm hoping he carries on with that.”
With grateful support from:-
FIND OUT MORE
Ectodermal Dysplasia
Ectodermal Dysplasias are genetic disorders that can affect skin, glands, teeth, hair and nails. They can also affect the eyes and/or throat too. Ectodermal Dysplasias can be medically identified by the combination of physical features a person has and the way in which it is inherited.
There are more than 100 different types of Ectodermal Dysplasias, yet most types share common symptoms which can range from mild to severe. Early diagnosis of a specific type can help to identify the combination of symptoms the person has or will develop in the future.
To learn more about Ectodermal Dysplasia, click here.
The Ectodermal Dysplasia Society
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia (ED). They work together with people who have ED, their families, researchers, health and other professionals to develop and share expertise, increase awareness and understanding, and assist with the day-to-day management of ED.
To find out more about The Ectodermal Dysplasia Society and how they can support you, click here.
Source: https://www.edsociety.co.uk/
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