Oct 172011
 

 My name is Hayley Okines and people tell me I am special.

I have a disease called Hutchinson-Gilford Progeria that makes me age eight times faster than other people.

The easiest way to explain it is it’s like my body is 100 years old when I am actually thirteen but I don’t like it when people call me old because I don’t feel like I am 100 years old.

I am smaller than other kids my age. I have a brother, Louis, who is nine and a sister, Ruby, who is six. Although I am the big sister in the family they are actually bigger than me.

Mum says I am one in eight million because my condition is so rare. I have had lots of TV programmes made about me because I am so different, and people I don’t know come up to me and say, ‘Hi, have I seen you on the telly?’ and I have to smile and be polite.

Living with progeria is hard because people treat you like a baby. The worst is having all the treatment and needles. I have been going toAmericafor special treatment that we hope will cure my progeria. I know the new drugs will not make me look like other kids but they will help me to grow hair and live longer.

Sometimes people ask me if I could have three wishes would I wish I didn’t have progeria. And I say no. It would be good to not have it, and it would be fun to go out and not get stared at and not have loads of people ask questions. I would rather have progeria than not have it, though. Don’t ask me why, but I wouldn’t change it.

When Mum and Dad first found out I had progeria the doctors said I would only live to thirteen.

On December 3 2011, I was fourteen.

I am not worried about dying. They said the Titanic wouldn’t sink but it did, so that proves experts can be wrong and I want to prove the doctors wrong.

My life with progeria is full of happiness and good memories. If I didn’t have progeria I would not have done most of the cool things I have done or met most of the cool people I have met.

Deep inside I am no different from anyone. We are all human.

Old Before My Time: Hayley Okines’ life with progeria

 

  37 Responses to “I have a disease called Hutchinson-Gilford Progeria that makes me age eight times faster than other people.”

  1. Can’t wait for your book to come out Hayley xxxxxxxxxxxxx

  2. Hello Hayley! I was so glad to hear from you! I just about choked up after reading your newsletter; there are days when I’m feeling sad, or depressed, but those days pale in comparison to days you must have at times, so I really have nothing to feel sad or depressed about it. You are so brave, and so positive about something so ugly in your life. You serve as a prime example of looking things straight in the eye and saying, “I may be afraid of you, but I will not allow you to win”. You are a young warrior. You will always be to me…Take care, Walk-in-Balance, Monica ‘Little Flower’ Alexander, East Otis, MA, USA

  3. Hello poppet,

    I haven’t watched your latest documentary (Channel 5) as I’ve been too poorly to sit up for long enough.

    However, I have read every word on your website, using my mobile phone.

    I think that you are truely an amazing person, you are so strong, always happy, even though you have been dealt a crap hand of cards, you live your life to the full, never complain, (even though you are a teenager heheh (do you get teenage strops? 😉 ))

    I am severely disabled, but it is not life-threatening. I have been totally inspired by your courage and determination to live a normal and fulfilled life. You have enabled me to put things into perspective, when I’m having a bad day, I think of you and other poorly children and it puts a smile on my face and I tell myself I am being silly for being down and upset.

    I would love to meet you one day to give you a massive big (gentle) hug and to just have a chat. I’m sure there are millions of people that want the same heheh, you have become somewhat a celebrity.

    I hope that your continuing treatment in America is successful and that you manage to get a full head of beautiful hair, which colour do you think it would be? I reckon you would look gorgeous with any colour.

    I had better stop now, I’ve “written” so much!

    Always thinking of you and “praying” (in my own special way) that they find a cure for Progeria so that you can live a longer life than me 🙂 (I’m 35 now, so I’m ancient compared to you heheh) 🙂

    Lots of love and gentle hugs!

    Carol.

    PS. What do you want to be when you grow up? (you may have said, somewhere on your website or blog, but I am too tired to search for it now) 😉

    My website link is my forum for people who love animals, it’s VERY quiet on there at the moment as all my regular members are busy with different things, but you are welcome to come have a look.

    All the best Hayley

    from Carol
    (Mum of two)

    xxx

  4. Hayley:
    I am so inspired by you…maybe not what a pretty little girl wants to hear but it’s true. I have watched you on TV everytime is shown–even if it has been on before. You are a precious jewel who has been given a heavy load to carry but at the same time, you have been given the ability to make others feel good. You can make people happy, you have made them laugh and yes, you have made them cry…but most of all you have made us “feel” and that my dear is a gift.
    Sending all the best to you, your family and your friends. I always smile when I think of your amazing spirit.
    Tricia, Dallas, Texas USA

  5. What an inspirational newsletter,It was wonderful to read of your acceptance of who you are and a lesson to those of us much older than you,in how to accept life,warts and all. What a great kid you are. All best wishes to you and your family

  6. I’m touched by your story in newsletter. You are very brave and optismistic girl and I hope this spirit you have makes you stronger and stronger.
    Titin, South Korea

  7. Hayley as so many friends in the area where she lives I am surprised she has time to remember she has Progeria. There is nothing her friends would do for her and she them. I am sure Hayely will pass the 14yr old mark and I am also believing she will make her 18th and 21st. To see Hayley out with her friends and drunk would be brilliant. The progress to a cure for this genetic disorder as been swift in reality and Hayley you have been the one person in this country that as brought the understanding of this disorder to the masses out there. I remember when I used to take Steph Abby and Aaron to school and you would always be there with that big smile on your face and the kiss your mum would give you. Keep fighting and you know you will outlive every date the doctors may give you.

  8. Hi Hayley

    I loved your newsletter – keep them coming. You are a breath of fresh air.

    Keep being positive and I am sure you will go from strength to strength, your outlook on life is an inspiration to us all

    Love and best wishes
    Christine – Edinburgh XXX

  9. Hi Hayley
    I have just finished your book which you & your Mum wrote it was heartwarming & you are a smashing young lady. I hope you are going from stength to strength on your new drug trial & have a fantastic 14th birthday young lady. You look really well on the cover. I’ve followed your story from the beginning, I used to have the picture of you starting school on your first day stuck to my fridge to remind me if I was feeling gloomy that I had no reason to, now I have your book cover beside me Bless you, love ,Sandy xxxxxx :)))))

  10. Dear Haley,
    I will just say that I have never before been so emotionally touched by one person’s courage as I was reading your article. I want you to know that although we do not know each other you now have a permanent place in my thoughts, heart and prayers.

    Sincerely
    Anthony Dixon

  11. Hello hayley..ive watched u many times on telly.. nn i think u are so remarkable..ur always happy.. ur a very cute nn adorable..i saw u nn ur lil friends on the jeremy kyle show..nn u make me smile..i can see ur a well proper lil fighter..an inspiration..i think u are very beautiful..take care lil lady..xxxx

  12. Dear Hayley, beutiful girl you touch my soul deeply, I never prayed, but now, for fist time in my live I prayed for you, I’ll hope you have a wonderfull live for many, many years…Milton Muñiz from Mexico

  13. Hi Hayley,
    My husband and I watched your story last night on tv. You are such a brave and beautiful girl! Your story is so inspirational, and I am so honored to get to learn about you and your family. Keep smiling your beautiful smile. You have brought joy to a lot of people, including me. You are in my prayers.

    Rebecca D
    Huntington Beach, CA

    PS, I can’t wait to read your book! I hope you are planning on writing more books. 🙂

  14. Hi Hayley!
    I saw your show and I admired you since then. I bought your book & i enjoyed reading it. I’m a baby nurse that deals with sick babies… I admire you for the positive outlook you have in your life despite your situation. you always have that bright,beautiful smile!

  15. Stay awesome will you? 😀

  16. Well Haley, you are also wise beyond your time. I admire your mature attitude and fighting spirit. Good going.

  17. Hey Hayley! I’m reading your book now and I absolutly love it. I want you to know that I’m doing a project on your disease and your book has been really helpful. I’m almost 12 years old and I live in Boston. I’m really interested in this disease and hearing your story made me want to find out more about it. I would like to thank you sooooooooo much for motivating me to learn more about Hutchinson-Gilford Progeria Syndrome. I hope we can get in touch sometime. <3 😀

  18. Hi Hayley, My name is Danielle, (Dani for short), I am 9 years old and live in Chicago, Illinois.
    You are a beautiful, inspirational, cool, sweet girl. I know it feels weird to have a disease, but you take it very nicely. Maybe we could get in touch! Um, here’s my email: danidoggy0331@gmail.com

    My phone number is 847-715-9559, call me any time!
    I am really proud of you for dealing with Hutchinson-Gilford Progeria Syndrome. Bye for now!
    Love, Dani <3 ( the hearts for YOU!)

  19. I loved reading your book and I love you <3

  20. Hayley – I just finished reading your book. I watched one of the documentaries on you and ordered the book immediately. You are a huge inspiration and I share your story everyday. My mom has cancer and talks about you and your story more frequently than hers. Not only are you living the life you deserve, but you’re allowing thousands of others to, as well. You’re a great example of a great person. I wish I could know you, but from everything I have read and watched I feel like I already do. Thank you for all you do. Its because of people like you that people still have faith and hope. I think about you everyday. My thoughts and prayers are with you and your family. Stay strong and keep smiling like you always do. You’re amazing.
    -With Love, Olivia

  21. Last night, after protest for having to wake up early the next day … a little being slapped me and showed me that there’s more to be grateful that so complain …

    How we walk through life envying those who have something more than us and bitching about not having a late model car, a pair of shoes best designer, the most expensive cell phone, having enough money for not working more … Last night while in bed I complained about having to wake up early the next day, my stupidity street for a moment and heard a voice saying “I just want to have hair” …

    Some will say that I touch a life full of suffering and sorrow, and others, a life full of exceedances and happiness. It is enough to see her smile and listen to understand that there is another way to live life.

    So many people go through life without tomarce the time to smile and be okay. So many people who are busy lamenting about things that make no sense do not have time to smile for a moment. Many who see the glass empty and not just almost completely filled …

    So many think they know everything about life, knowing how to be successful, like make money, how to get a step up which is next … Many who believe they are more than not stop to hear what a 14 years they could say and how much they could teach …

    Luckily I could take a moment to listen and realize that there is another way to live life.

    Excuse my English, I’m from Argentina but I could not let not knowing a language prevented me to thank that guy who taught me a little more.

    Thank you.

  22. Hi Hayley!

    I am reading your book now for 2 days and am already at page 140 so i think i can finish it today!
    You are such an inspiration, a great fighter AND best of all – your birthday is very near 😉

    I am also jealous because you met my crush Kylie Minogue haha

    All the best to you and your family.

    Thank you really for being such a brave kid!

    Lots of love,

    Jeroen

  23. Dear Hayley,
    I am in love with your spirit through all of this. The Lord blesses your spirit. I know God is watching you because along with your rare disease, you have lived longer than you thought.About the Titanic sinking, The thing they said before it sank was “Not even God can sink this ship”…They were wrong..im not saying God sank the ship because they said that, because God doesnt do evil He just lets it happen until the time is right and then He will renew EVERYTHING..He will cure all sicknesses and even death but our hearts have to be in the right place.. Hayley you are so loved and i can tell by that paragraph i just read, you are so smart and have the sweetest soul. I can say i love you without meeting you because The Lord lives in me. I am almost crying because i feel strongly he is working through me to reach out to you. He wants you to be with him along with every other person on this earth…but the sad thing is, not a lot of people listen. And I wouldn’t want it to be gone because it would make me unique and it would also test my faith. I know at first i would be upset and i would think my life isnt fair but thats not the way to see it. Your mom was right you are so special! I live in the united states. I live in Pennsylvania…I wish with everything i could meet you and talk with you more about this I would feel i had a purpose. My email is paige.liller@gmail.com or my facebook is facebook.com/paige.liller. I want to answer any questions but most importantly i want to be your friend and fight beside you through all of this..Love your sister, Paige Liller

  24. Hi Hayley, hope you are well.

    My daughter has just received her results from college and she got an A for her project on Progeria. We are all very pleased with her. You totally inspired her Hayley. Sam thinks you are wonderful and that is why she found out all she could about Progeria.

    We hope to come to one of your book signings if you do any more. We live in Folkestone. I receive your newsletter via email and keep a look out for any new dates.

    Take care Hayley, Lyn

  25. Hi dear!
    I’m from Brazil and I’m watching you on Nat Geo right no! It’s amazing the way you just live you know! you make me need to talk with you. I just want to know how are you now exactilly 🙂 I hope you’re fine. You are very special ! It’s the second time that I’m watching your tv program. Well, this is it. God bless you! One day when I see your book here in Brazil, I will buy it! Kisses fro me and my family!

  26. Hola Hayley
    Somos de Colombia y queremos decirte que eres un ejemplo de espíritu, la vida es tan simple como reconocer lo afortunados que fuimos en la vida pero eso solo lo vemos sabiendo y conociendo personas como tu. Gracias por enseñarnos lo linda que es la vida

    En Colombia tendrás unos amigos
    Att: familia Cajica rojas

  27. Hello ms Okines! Pardon me by my bad grammar english but I admire your fighting spirit.Right now I´m watching you on swedish television and must say where in the whole universe do you get the power to live further on? If God is excisting(i´m a ateist)I say he is an unfair God.I wish you all luck in the future.Keep on fighting for your life.May the force be with you!!

  28. I love your three wishes comment and not getting rid of progeria. I have amniotic band syndrome and people ask me all of the time if I would ever wish to not have it. And no, it makes me different, and I find my own way of doing things. It fits me. You inspire a lot of people to live life. I’m new to your story, and I just had to say something in response because you have an attitude that many people wish they had.

  29. Hi Haley, I just stumbled upon a video about you on youtube, and I instantly fall in love with all the goodness and serenity that beam from your beautiful eyes and your innocent, kind smile. I’m 40 and I’ve had a physical disability for the last 13 years, and I know life can be really hard when you’re different and live in a world that seems to have been built for other people, but I know life can also be good and acceptance has a lot to do with it.
    Once, I heard one person say that yes, medicines do cure, but love, love also cures, and I think that’s true. So, I (and of course, many many other people like me) am sending out all my love for you! Take care, Haley!

  30. Hayley, you are such an amazing person.
    thank you for all the happy-ness & hope you brought into the world.
    keep hanging on! Best wishes,
    Phoenix!

  31. i

    i fell sorry for you hayley you are a nice girl to work with everybody love you
    love from charmaine booth at bexhill high school

  32. You are an amazing girl, so beautiful on the inside and out!

  33. Hello,

    I´m from Brazil and just had seen the documentary about you in Discovery.
    I’m looking for reading your book.
    You are so special!
    Best wishes,

    Eliane

  34. Hi Hayley,
    my friend’s mum lent me your book, it took a while for me to read it but I really enjoyed it, so interesting!!!
    Wow you met Justin Bebo!!!
    Do you still like him??
    my little cousin saw your book on my bed and said that’s Hayley she was on tv she’s soo cute (she’s only 8). I am 32 but I still sometimes feel on the odd day that I am really only 12 years old (shh don’t tell anyone) and that I haven’t grown up, after all, I’m tragically living at home with my parents lol.
    umm..Will you be writing anymore books? I mean your life is so interesting you don’t need to make anything up.If somebody read my diary they would yawn with boredom.
    But you can read my blog if you wish and don’t have anything better to do.

    Well, God Bless and…don’t spend too much time on the computer! It’s terribly aging you know!!!
    lots of love
    from Selina in NZ

  35. Hi Hayley!Im writing you from Spain (my english is not good…sorry)I have seen your story on the tv this night and i just want to say I admire your courage and I think we should all learn from you.I sincerely hope all the best.

  36. Hi Hayley!
    My name is Ana, I´m from Seville, Spain, I have forty-two and just want to say that you are one of the strongest people I’ve ever seen. I love to see you smile and wish the world had more people like you. I wish you well. A big hug and thank you for yor films and your book

  37. Hayley is such a doll! She is smart, sweet, cute and such an inspiration. Her smile could light up a room!

 Leave a Reply

(required)

(required)