3 Comments

  1. Bridgit Rigby
    4th June 2019 @ 7:44 pm

    Thank you Sarah and Jo for highlighting CSID and the difficult journeys family have to endure to reach a diagnosis.
    Our family story was similar, diagnosis for my daughter at the age 9, many years ago.
    It made me really sad to hear what you had gone though and reminded me of all the challenges and struggles we had faced, along with many others.
    So pleased to read that you had treatment for Millie and hope she continues to thrive, I hope that sharing your story will help to make a difference, for patients and families of rare diseases.

    Reply

    • Lucy McKay
      2nd July 2019 @ 1:20 pm

      Dear Bridgit
      Thank you for your kind message of support for Sarah. I am pleased that M4RD is not only raising awareness about rare diseases but is also able to connect people so they can share experiences. I hope you will continue to follow our work.
      Best wishes,
      Lucy McKay – CEO of M4RD

      Reply

    • Sarah Bicknell
      30th September 2019 @ 10:37 pm

      Dear Bridgit
      Thank you so much for your kind words, sharing this difficult experience has helped a number of other families already who have reached out for support to us whilst they are experiencing a similar diagnostic odyssey. It is comforting to know that we may be able to help others in a similar situation, where the knowledge of this condition in the UK is still at a basic level.
      We hope to continue to help others and Millie continues to go from strength to strength! She has just started school and the confident, bubbly little girl that skips into class every day is a world apart from the recoiled, introverted child who lived with pain and discomfort every day of her life until she turned 4.
      I hope your daughter also is thriving!

      Reply

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