my daddy couldn't come because he had to work and I can't go home after it, mammy said its to far away, we have to get an aeroplane. I will want my family but I can't. That makes me sad.
Hi Simon Harris.
My name is Ruby. I'm 4. My mammy is helping me write this because she said you are all the doctors boss. The first picture is how everyone knows me. Smiley happy and always have to wear make up. The second is what happens after I play to much or go out. I can't move or hold my bottle so it needs to be up on a cushion so I can drink it , this can last hours or days, the most was 8days.
Yesterday I had to come to England to see a doctor because there is none in Ireland and my mammy couldnt find anyone to listen till we found some lovely eds people.
My mammy said the doctor will help me so I can colour my pictures or play when I want to and not need rests all the time.
Today I met a lovely doctor and my mammy was right.
My mammy is sad because tomorrow I've to go for alot of hard tests and my mammy will have to hold me with no one to help. I will scream for my daddy and be sad because I will want to go home. my daddy couldn't come because he had to work and I can't go home after it, mammy said its to far away, we have to get an aeroplane. I will want my family but I can't. That makes me sad.
The doctor wanted us to stay longer but I got sad because I miss my family and Frank so mammy said its OK we will just come back in 2 weeks. Why can't I just see a doctor where I live. There is lots of people like me.
My family should be able to come with me or I should be able to go home to my toys.
I don't like going on aeroplanes for blood tests because they make me sad and I can't go home. You are only meant to go on aeroplanes to holidays. Its silly.
This is in ruby's words as best as I can transcribe. It's wrong we are here but I'm so greatful we could be. It's hard and sad. We shouldn't have to travel for basic health care. EDS isn't rare, it's rarely diagnosed. We have met one doctor in Ireland who knows about it and almost five years I'm fighting a brick wall to be listened to for my daughter. 4 and already questioning the country's doctors bosses. x