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“In a lot of cases it might be obvious to people that a child has a rare disease of some sort but this is not always the case.”
“When people see his bruises, which can sometimes be quite obvious, they stare or point and whisper. “Oh god, what happened to your face?” is a popular one”.”
“We will keep trying to explain to people that even though you can’t see it and you won’t notice it most of the time, her brain does not work the same as most other children.”
“Some days I just feel so much anger and it is awful to say but I envy my friends that their children have the lives I wished for mine.”
“We used to feel so embarrassed when people would look at Alex but in order to stay sane we have to just ignore people’s glances and get on with our day.”
“We have heard a lot of jokes from the public about the fact that Nina wears sunglasses - using public transport, walking on the streets, etc. While we have grown used to it, we worry how people will treat her when we are not around to offer comfort or protection.”
“I think the tiredness is difficult for people to understand, especially when there is no reason for you to be tired. You didn’t do anything different the day before, you didn’t have a late night, you didn’t have a bad sleep and yet you wake up and feel that you haven’t had any sleep.”
“As a 17 year old girl to lose all my hair was huge. I felt really ugly and just didn’t want anyone to see me. I didn’t go to college for two weeks, I refused to leave the house. I thought that people are going to look at me and know I was sick. ”
“Once in a taxi, the driver asked me what was wrong with her. I hate that phrase as there was nothing ‘wrong’ with her from my point of view. She was perfect as she was; she just needed a little help feeding.”
“If he is having a meltdown in public people often don’t know how to react as he can behave erratically and can shout & scream.”
“The genuine smilers get me every time and often leave a lump in my throat! Sadly though, there are people out there who seem to lack any empathy or understanding whatsoever. The ones who walk in front of Hannah’s wheelchair or swing their bags at her face level, the ones who leave me struggling to get through a door (the list is endless). For me, the starers are the worst.”
“Whilst out walking in Moel Famau some children called Matthew ‘freaky’. The most upsetting part of this was the reaction of the parents.”
“Everyone asks her for her ID but she is very obliging and will often pre-empt their reaction, having her ID out before they even ask!”
“They do get frustrated sometimes because they can’t do the same as everybody else but they have not really known any different. ”
