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Jono Lancaster wants to take part in triathlon, bungee jumping and learn to dive. Maybe he would even try to eat a dish of larvae or lie down in a bathtub full of spiders. He has had Treacher Collins syndrome since childhood, a genetic defect consisting in the loss of the bones of the skull. As he says, it was thanks to his illness that he really fell in love with life. And he wants to teach others to do so.
Unusual disease
Treacher Collins syndrome, also known as facial-mandibular dysostasis, is a rare genetic disorder that occurs only once in 50.000 births. It is caused by a mutation within the fifth chromosome and is characterized by partial atrophy of the cheekbones, deformation of the jaw and sunken, oblique eyes. By distorting the auricles, it often causes hearing problems or complete loss of hearing. The condition was described in 1900 by the British surgeon and ophthalmologist, Edward Treacher Collins.
Know the symptoms of rare diseases
In addition to the obvious physical flaws, the disease also brings emotional problems – people suffering from Treacher Collins syndrome often suffer from a lack of self-confidence. Their atypical appearance is controversial and may also lead to social exclusion, which is particularly difficult for children and adolescents.
I felt like I was the only sick person in the world
Jono Lancaster comes from Great Britain. His biological parents placed him up for adoption 36 hours after he was born. He was taken in by a childless, loving woman. Though Jono is really happy now and at peace with his illness, he admits that during his teenage years he had a serious problem with self-acceptance. I was so desperate that I could do anything to make any friends. I would buy a lot of sweets and candies and then treat the other kids in the classroom, thinking it would win their sympathy. Over the years I have tried to do a lot of stupid things to make people remember me and talk about me differently than in terms of my appearance. I set off a firecracker in class, I had alcohol excesses … Well, it didn’t win my teachers sympathy, and I had a rather shady reputation among other parents … I was getting lonely, living more and more on the sidelines. I didn’t tell my adoptive mom about all this, I didn’t want to worry her. And so she did a lot for me (…). I dreamed that someone like me would appear – come and say: ‘You can do more. You can achieve anything you want. ‘ In fact, it felt like the only sick person in the world where there was no one like me. – he confided in an interview with the BBC.
He also mentions that he hated looking in the mirror. For twenty years he had a hard time accepting the look of his face.
Difficult road to self-acceptance
The key moment in Jono’s life came when his colleague became a bar manager and offered him a job as a waiter. I was 20 years old. Everyone of this age tries different jobs, many of my friends have taken up a job at a bar. I thought: why shouldn’t I try? The Englishman confesses that he was drenched in sweat for fear of his every change. I was terrified of the expected reactions from people. Drunken customers can be so ruthless, so cruel … It was not easy, but I managed to meet a lot of nice, affectionate people who were genuinely interested in what was actually going on with my face. Experience has taught Jono self-confidence. Soon, instead of hiding in club toilets, he started dating girls. Some time later, he graduated from the sports academy and obtained his fitness instructor license.
Of course, I preferred e-mail to ask for a job rather than tossing my CV on the desk at the reception desk. Let’s face it, the sports industry is all about appearance. Gyms are full of mirrors for a reason.
However, he got the job with the help of a regular job interview and training he arranged for his boss, Shaun. The prospect of permanent employment greatly influenced Jono’s self-esteem. He was so successful that he met Laura Richardson at the same gym.
I was testing her heart rate. It was over a hundred beats a minute. I think she liked me.
Currently, Jono and Laura have been together for over four years. They recently moved into their new home in West Yorkshire.
Jono with Mariah, a girl suffering from the same ailment. Photo: Facebook
With a mission to raise awareness
Jono Lancaster is thirty years old and has three documentaries to his credit. He became the ambassador of the Life for a Kid Foundation and personally supports children around the world suffering from Treacher Collins syndrome. He has learned to truly love life and himself, which beats his official Twitter account, where he uploads joyful photos documenting meetings with children affected by the disease. In November, he traveled to Australia and visited two-year-old Zackary. The meeting was arranged by the boy’s mother as soon as Jono posted information about the planned trip.
Sam repeatedly pointed out that as a child he badly needed someone who would show him that living with TCS does not mean that it is time to give up his passions and dreams. That finding a loving partner, rewarding job and original hobby is not only assigned to healthy people. That everyone can live as they dreamed of. Jono did not find anyone like that, he came to the truth alone. Perhaps that is why this little mission of bringing joy and peace of mind to sick children is so important to the Englishman.
Jono Lancaster has also been appearing in schools for a long time. During specially organized meetings, he teaches children to respect each other and tames them that a person who looks different thinks and feels exactly the same. He explains how bad he felt during his school days, when his friends reacted to his face with aggression or mockery, and explains that apart from looks, something else matters.
“I hate when a little boy watches me while shopping and his mother discreetly tells him to look away. I wish he would look, come over, ask why I look like this. To be able to explain to him that it is a disease with which you can live normally. “
The most difficult question
There is, however, a gap in the orderly world of Jono and Laura. They are both still young, but at the same time confident that these are the best years to be able to have children of their own. And here they face the most difficult question. How do you consciously take such a step when the chance of genetic transmission of Treacher Collins’ disease is as high as 50 percent?
“I have seen families with children suffering from all kinds of illnesses and I couldn’t believe how great they are doing. I would really like to take my child to dance, gymnastics or football, but how could I intentionally expose them to complicated surgery, hospital conditions or bullying? I can not stop thinking about it.”. – we read in the article written right after the documentary about Jono “So what if my baby is born like me?” shot by the BBC.
“Before I met Laura, adoption seemed the obvious option. I could give some child a second chance, make them happy. However, Laura feels that her maternal instincts could suffer if she were to look after someone else’s child. Or if our son or daughter rebelled and wanted to find their biological parents … We both want the child to be truly ours. And I want to look after Laura when she is pregnant – rushing down the stairs at two in the morning to satisfy her whim and bring pickles … “
Jono cannot imagine that he would give up the child.
“I’ve always dreamed of being a father. I crave those wonderful moments in a child’s life that I could give him. My adoptive mom was an amazing woman, but I never knew the role of a dad in my life. I’d like to make up for it. “
A solution for a couple could be artificial in vitro fertilization with the so-called pre-implantation genetic diagnosis, Transaction office) involving the genetic examination of the embryo before transferring it to the uterus. The test is performed to check that the embryo is not infected with a disease. That way, doctors could check that Jono and Laura’s baby was not infected with Treacher Collins syndrome.
“On the one hand, I would protect my child from suffering due to the disease. I know how much pain and nerves the constant visits to the hospital cost … On the other hand, if my biological parents had decided to go with PGD, I wouldn’t be here … “
Jono points out that thinking about any option “makes him feel like an emotional rollercoaster” – each of his arguments has an answer, and the decision seems impossible to make. And while he seems most convinced of the option that his baby is certainly born healthy, he would not have changed his situation himself.
“Doctors always asked me if I wanted plastic surgery to rebuild the cheekbones, straighten my teeth and align my jaw. No matter how depressed I was, I thought, God made me this way, I don’t want to change that. And I’m glad I didn’t make up my mind – I’m proud of who I am. And that’s the Treacher Collins syndrome that made me like that. “
Tekst: Adriana Hurry