LADDSYNDROME

A little about me. 

At a young age of around 11, I was taken to a hearing test at my local hospital with my mother. I remember not really understanding why I was having to go through this, confused and quite upset. 

I sat and completed the test, where you press a button every time you hear a ‘buzz’ or ‘click’ through head phones. After, we sat together with a consultant, everything seemed abit fuzzy and my mother was crying uncontrollably. Admittedly I had no idea what was going on, nor did I have any understanding of what laid ahead of me. 

I had been diagnosed with moderate to severe hearing loss, and I was transferred to Great Ormand Street hospital and the Royal ear nose and throat hospital in London. For the next 9 years I frequently attended both of these hospitals for investigations, as to discover why I lost my hearing at such a later stage of my childhood. 

I struggled with being prescribed hearing aids at such a crucial age of 12, I was starting senior school –  which is a big mile stone in your life alone. Yet I was having to face people I went to junior school, with these new hearing aids that was a in the ear type mould and stuck out like a sore thumb. I felt humiliated, degraded, ashamed and I refused to wear them and took them out soon as I arrived at school. 

At the age of 16, I was finally diagnosed with LADD syndrome. 

* lacrimo-auriculo-dento-digital syndrome

This is an ‘extremely rare genetic disorder, only 50 cases since 1967 have been reported in the world.’ 

I have the typical characteristics of cupped ears, hearing loss, dental and eye problems, small thumb digits and my kidneys are affected by this condition. The syndrome can affect many other parts of the body. I am quite lucky to just carry just a few of the smaller characteristics. 

Alivia so far has been identified with the cupped ears, hearing loss and digits, she’s currently to young to be diagnosed with any other characteristics, these will be picked up as she gets older. 

What is it like to be a ‘normal hearing’ person, to live a life in silence? 

Firstly I want to express that those two aids that I held such a grudge against most of my teenage years, have turned out to be my best friends, my life and apart of me now. They have allowed me to lead a ‘normal life’, I can hear my son call me mummy. I can hear my partner tell me he loves me daily, I am able to tend to my children when in need, I am able to work and provide a living for my family. I am able to be what ever I want to be, with these. They may look or feel unpleasant. But they will be accepted as apart of you, by the people that are worthy to be in your life. 

I miss the simple things in life, all hearing people take for granted. 

The birds tweeting on a summers morning, hearing your siblings argue or your parent hoovering on Sunday mornings. The comfort of knowing what’s around you, swimming and hearing the delight of youngsters squealing, enjoying themselves. The feeling of awkwardness while in the hairdressers and having to take your hearing aids out to have your hair washed, the anxiety you feel when you have misheard someone and panicking they think you’re stupid. 

When you wake up without your hearing aids in, it’s almost like the world is on standby. 

Dead, Motionless and lonely.

It is my absolute mission to empower Alivia-Ellen, so she doesn’t spend her days feeling so down about her special difference. I want her to not look at life like its an obstacle, but just a hurdle she can succeed but in a different way to others.