My name is Katie and I am 12 years old. My little brother is Charlie and he is a SWAN, meaning he has a Syndrome Without A Name. He has low muscle tone, visual and hearing impairments, sometimes he has seizures and spends a lot of time in and out of hospital. He is also really annoying!
Mum asked me if I wanted to go to Paultons Park with SWAN UK, and I wasn’t really keen until I found out that there were going to be other kids my age there and there were big rides we could go on together. Charlie really likes Peppa Pig and Mum and Dad were looking forward to meeting other SWAN UK parents.
This is where I met Tinka – Tinka’s little brother is also a SWAN (Or graduate SWAN as he has been diagnosed with an ultra rare condition). We spent the whole afternoon together going on the rides and just chatting. Tinka and I got on really well and we swapped Facetime numbers to keep in contact. As Tinka’s brother is similar to Charlie she totally gets what I need to do – she gets how worried I get about Charlie and how I try to protect him all the time. It was really nice to spend the afternoon with Tinka and not have to worry about our little brothers. We spent hours on the water ride and got really, really wet! Miriam who works for SWAN UK came on the roller coaster with us and she was scared!
SWAN UK days out are great, as they mean siblings can meet up with each other and nobody is looking at our brothers or sisters and wondering what is wrong with them. It gives us a break to be kids without worrying. Also, because SWAN UK staff were at the event to help out, everyone got a shot on things that they want to do.
Tinka and I are going to meet up on the next SWAN UK day out at London Zoo – I can’t wait to see her again.
SWAN UK days out are great and really good fun. Thank you SWAN UK for organising the best days out.