Nov 022011

From left to right – Hayley, Amber, Claudia from Portugal, Micael Correia, (translator & right hand man) and Rania from France. Photo by by Benno Neeleman.

I just got back from the annual Progeria Reunion in Ashford, Kent. It was the chance for me to see lots of my old friends from other countries like Michiel and Amber from Belgium and Claudia from Portugal. All the families there had a good time. We got to ride on a steam train which was really cool and went on lots of trips and days out.

My Mum and Dad organised the reunion again this year and they had quite a stressful time but did a great job.

Sometimes I was a bit sad because my right hip was hurting me a lot. Mum wants me to have an operation on my hip now to stop it dislocating but I want to wait until after Christmas. I couldn’t walk around much so I had to sit down a lot with my friend Erin and my cousin Sophie. I was disappointed because I couldn’t even go swimming with my friends. Mum bought me a chunky buggy so that she could push me around because I’ve refused to have a wheelchair.

Monday was Hallowe’en and we carved pumpkins and made glitter tattoos. In the night we had a Hallowe’en Party. I had bought a pair of black angel wings and I was going to dress up as a fallen angel. But I couldn’t get up and walk around because my hip was hurting me too much and thought there would be no point in wearing them if I had to sit in my buggy all night. Instead Mum and my best friend Erin helped me to backcomb my wig and spray it with glitter so that it looked like I had real scary hair – and I wore loads of make-up and tattoos to look really frightening!

At the party my friend Claudia made me cry. She doesn’t speak much English and I don’t speak any Portuguese but she is like my best friend. She is the same age as me and we always dance and play together at the reunions. She asked me to dance to “Someone Like You” by Adele. I got up out of my buggy but I burst into tears when Claudia started singing to me. I don’t know why it made me cry, but it did. I was really sad to have to say goodbye to Claudia on Tuesday when we came home. It was sad that we all had to go home but, next year, Mum says the reunion will be in Italy. I can’t wait to see all my friends again and next year I hope I can dance again and my stupid hip will stop hurting me!

Thank you for following my blog.  Hayley x   PS: pls follow me on Twitter and Facebook too 🙂

  5 Responses to “#HayleyOkines blog post about the #Progeria Reunion”

  1. bless you darlin glad you had a lovely time at your reunion and keep your chin up hope your hip feels better soon cant wait to read your book have ordered it and cant wait for it to arrive i bet you are also looking forward to your birthday take care lovely x x x

  2. Hi Haley
    Just got your latest newsletter via email, so nice to get news of you. Glad you enjoyed Progeria Reunion. I like your hairpiece. I hope the hip gets sorted out and you are in not too much pain at the moment with it. Keep on keeping on!

    WIth very best wishes Rob

  3. Hi Haley
    I,m glad you enjoyed your reunion even though it was very tough wtih your hip, hope it feels better soon. I would love to have seen your scary hair for halloween I can look like that without trying ha ha
    Looking forward to the book coming!!!!
    Take care and keep smiling
    love and best wishes xxx

  4. Hi darl Special Princess Hayley – it´s so wonderful to get email and hear what you have done and how are you. Sounds very thrilling your party – and fun also – even there´s that hip hurting – but you are such powerful and lively girl that you figure out the way to have fun with your friends. JUST GREAT;) I like your attitude, Hayley!
    I just ordered your book – and want say CONGRATULATIONS – it´s so great that you had made it – I´m waiting it coming to post and want to start reading it at once.
    Dear Hayley have a fun at school and with your family,
    I think you many times and send you big smile and lots of love ;))
    Ari from Helsinki, Finland

  5. I’m sad to hear that you were in so much pain at your reunion but it sounds as though you were determined to enjoy yourself and have some fun. I hope you’re going to upload the photos of your Halloween party. I can’t wait to see how you did your hair…have you managed to get all the knots out from all the back-combing? lol. x

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