Hope for Haley - Episode 2

Five’s acclaimed documentary strand exploring remarkable tales of human experience from across the globe continues. This film catches up with progeria sufferer Hayley Okines, who has been the subject of two Five documentaries in the past.

‘Hope for Hayley’ continues the little girl’s bittersweet story in perhaps the most important year of her life so far –one in which she deals with the news that her condition may at last be curable. Progeria is an aggressive disease which ages its sufferers eight years for every year of their life. That is why, at nine years of age, Hayley has the body of a woman in her 70s.

Hayley’s parents, Kerry and Mark, have recently learned of a breakthrough treatment in the United States. A new drug is being developed that could arrest and even reverse the effects of the disease. Hayley will be a guinea pig in the trials, along with 14 other progeria kids. Although this development brings the Okines fresh hope, the news is also tinged with sadness after the death of Hayley’s best friend, an 11-year-old progeria sufferer. With every month and year so precious, the Okines now face an excruciating wait for the trials to be approved by the Federal Drugs Agency (FDA).

Having been the subject of numerous documentaries and talk shows, Hayley has become a poster child for progeria awareness. She is constantly recognised by members of the public, and her parents would not have it any other way. They attend the progeria reunion in the United States each year, building a support system with the families of other sufferers from around the world.

Whilst awaiting news on whether the drug trials will go ahead, the Okines receive a visit from a Belgian family – the Vandeweerts – who, against all odds, have two progeria children. Their son is also registered to participate in the trials, and the two families discuss their concerns about the potential dangers of the new medication. Their fears are well-founded, as so far the drug has only been used on mice, and the side effects that may occur in humans are yet to be tested. Researchers have explained that changes in patients could be obvious after just three days on the medication, and Kerry is worried that the children’s frail bodies will not be able to cope. With a series of tests taking place in the States every 16 weeks, Hayley’s parents voice their fear that each time she boards the plane, she might not be
coming home again.

The film provides an intimate and revealing insight into the life of this extraordinary little girl. Hayley is more conscious of her condition than ever, and startling in her frankness. She talks fluently and willingly on camera to director James Routh, who five years ago set out to make a unique record of her tragically compressed life. Her feelings on the death of her best friend – which has brought the reality of her disease into even sharper relief –are explored, as are her mechanisms for coping with grief and fear.

Wednesday 27th February at 9:00pm on five

About the author

  • paul gair

    keep shining haley,you have shined in my heart.

  • Julie Higgins

    what a lesson you can teach us all Hayley – so brave and frank about your condition. I missed the last 15 minutes of the programme last night so I don’t know if your trials worked – I really hope so. All the best angel x

  • Grace Johnson

    Hayley, I hope the trials works for you girl. You touched my heart deeply and I pray for you every day. I hope to see another programme of you soon. Lots of love sweetheart xx

  • Marie Fullerton

    Always in my thoughts. Love Marie xxx

  • Grace D

    I think that hayley is amazing and a true inspiration to everyone. she is the most beautiful little girl I have ever seen and I hope everything works out. I hope to see more of your success on television. All my love to hayley, your little star. xxx

  • Julian Silenzi

    Angels exist. You are one of them. Send you and your beautiful family all my true love.

  • Angela

    Haley, you are one of the most beautiful girls I’ve ever seen — inside and out!! 🙂

  • Deborah

    You are such a beautiful little girl with the face of an angel. You have so many people praying for you. Remember that God has a reason for everything in life. Keep praying and keep believing.
    All my Hugs and Love!

  • helen

    Hi darling i hope everything goes great for you and your family little angel, you are so brave and have a heart so big and bright wish you all the best. from helen and family

  • Pamela

    Hello Haley, I have never known such a happy little girl, you truly are an angel. I wish you and your family the best of luck with the drug trials. Keep smiling sweetie.

  • Sherry Crawford

    You are truly an angel among us. As are your friends & family. I am praying that this new treatment works for you and the others affected with progeria. I was so touched by your story. God bless you.

  • shelly and maddy kube

    My daughter maddy and I watched your 2 episodes and we love you so so much and we are thinking of you. XXXXXXXXXX

  • Haley you are so brave good luck on your tests and remember God is with you!!! You really have touched soooo many people’s lives! 🙂 You have truly changed my perspective on life! 🙂 🙂 🙂 🙂 🙂 🙂 🙂

  • Theresa

    Hi Haley I just want to say what a beautiful little girl you are and I hope the treatments work well and you will be home soon , God Bless

  • Elizabeth

    Haley, you are an extremely special young lady. I pray that the treatments help you. God bless you and your family. Keep that gorgeous smile!!! xoxox

  • KaliPeterson


    I have never been so touched by someone in my entire life. You are amazing, beautuiful, positive, and energetic! You truly are an inspiration to the rest of the world. You have touched my soul, and many others as well. I wish you a beautiful life!

    Love, Kali

  • Meagan

    Wow Haley! I am a young girl myself and when I watched your show I was touched! Haley you are beautiful and so happy all the time. Your beautiful smile brightened my day and I pray that this treatment works for you! I wish all the best to you and your family from my heart. Good luck Haley!

  • Victoria:)

    hayley,you are so fascinating i love how you are so hopefull i wish you the best:)))

  • Jim Puz

    Dear Haley,

    I just finished viewing your documentary and was vividly moved by your sweet courage to face each day anew with the unfettered determination to fight your disease with everything you have! Your body may have aged but your mind and heart are clearly demonstrable of someone who is bright, perceptive, positive, energetic in spirit, warmly personable, and so utterly lovable in every way imaginable! You are a living testament of all that is good and precious despite the overwhelming odds of your condition! I do hope and pray that the medical trial you are presently undergoing will prove to be pivotal in bringing you a long and happy life with your lovely and faithful family and friends!!!!!!! God bless you always!!!

  • Dave Rogers

    Hi Haley,
    Just wanted to say hello and tell you that you are such a beautiful person! You are an Angel! Stay strong and stay the way you are! Thanks for sharing your life with everyone and educating us. Good luck and God Bless You! xxxooo

  • Steve

    I watched the the documentry on you Haley today and must say you are a great person. I like your positive attitude and as of now Im going to try and do the same. Thanks for sharing your story and I hope your treatment turns out great and Im sure it will 🙂

  • Pam

    Hi Haley;

    My twin sister and I watched your story. You are a brave and wonderful little girl who inspires us all. Your parents are quite amazing too and all of you for bringing awareness to the world about this disease. We have been wanting to get in touch with those who suffer from this disease as we know that the brain thru the subconscious mind can make exactly what you need, when you need it in the right amounts. We don’t want this to sound like a commercial but we truly believe your own body can work for you. Please have your parents check out our website http://www.cellfhelp.com go to videos and watch particularly the 3rd video Energize your mind. Then go to products and look at the premium package where you can customize what you need. As it is known about what protein is not working right we believe this can be conveyed to the mind to start performing the way the body is supposed to. Also there is a Cellular Health, Stem Cells and some more modules that will help you too.

    With Love and God’s Blessings,
    Pam and Patty

  • BBC One
  • BBC Two
  • BBC Three
  • ITV1
  • ITV2
  • 4
  • E4
  • Film4
  • More4
  • Five
  • Fiver
  • Sky1