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Mila's Journey - CDKL5

  • First intensive complete

      11 August 2025

    Mila attended her first intensive therapy last week, we have been advised by the team that they feel she would benefit from regular weekly sessions, so we will be doing day trips to Rotorua each Friday starting this week. I’m so excited to see where this journey takes her! Thank you all for the support🩷 You can follow along on her journey and progress over on her instagram page milasjourney_cdkl5

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  • Counting down the days!

      9 July 2025

    We're getting so close to the start of Mila's first intensive therapy block, and emotions are high! Excited, nervous, hopeful... all of it.

    This journey has been a long time coming. We've spent a lot of time researching, fundraising and preparing ourselves. We know it is going to be a challenge for Mila, and we are going into it without expectations but so much hope that this will boost Mila in the right direction.

    We are so thankful to everyone for the donations, love and support to get us to this point. We could never have done it without you all. Please keep cheering Mila on from afar. We will keep you posted. xx

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  • Hope for Mila

      4 June 2025

    We have decided to extend, due to multiple reasons. The main reason is that Mila is only two years old, and therapies are going to need to be regular. The more we can fundraise, the better the chance of Mila having a better quality of life. Thank you to everyone who has donated! It is our biggest blessing. Bring on Mila's first intensive in August!!!

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  • One day at a time, praying for the best🤞🏼

      26 May 2025
    Main image

    Mila is now two years old. While she continues to face daily challenges, we’re so proud of how hard she’s fighting. She’s still having multiple seizures, and her development is progressing slowly. She hasn’t yet gained full head control, and she’s not able to sit unassisted, has minimal use of her hands, arms, legs etc and is unable to communicate, but we’re seeing small signs of awareness and engagement that keep us going.

    Her vision difficulties remain, but we’re working closely with her care team to support her in every way we can. Every little smile and response means the world to us.

    We are continuing to raise funds to access further therapies – including intensive programs that could really support her development. These therapies are costly, but they offer hope for progress in areas like mobility, communication, and overall quality of life.

    Thank you to everyone who’s continued to support Mila’s journey – through kind words, donations, and sharing her story. Your support truly means everything to our family. We’re taking things one day at a time and holding onto hope for what’s ahead.

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    • 29/05/2025 by janette

      Happy Birthday Mila xxx

  • Thank you!!

      24 March 2025

    Once again, thank you all so much for the support this far. I just thought I would give a little update and let everyone know that we have managed to book Mila in for an intensive in August!! We were fortunate enough to secure a space with another company called Centre of Movement, which opened up a centre in NZ this year, so that is exciting as we won't have the stress of travelling to another country. We decided to do a one week intensive to see how Mila copes before throwing her in the deep end. We have decided to extend her give a little in hopes of being able to keep fundraising for her to be able to do multiple therapies. Thank you all so much for the support and we will keep you updated on her progress :)

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    • 25/03/2025 by Teresa

      That’s great news, looking forward to hearing how she goes. Lots of love to you all xxx

  • So close🙏🏼🥰

      19 December 2024

    Beyond grateful for the love & support you have all shown our daughter & family! This would never have been possible without the support. We are so close to the goal🙏🏼 We will be sure to keep everyone updated on Mila’s progress. You can also follow her journey over on instagram, where I try post regular updates! @milasjourney_cdkl5 🩷

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  • Appreciate the support🙏🏼

      11 November 2024

    We just want to let you all know how much we appreciate the support🙏🏼 To be able to get our daughter to NAPA would be an absolute dream come true! & we are getting closer to the goal🥰 All we want is for our daughter to have the best chance at reaching her developmental milestones, as any child/person should. Thank you again for the donations & shares🩷

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  • Progress

      31 October 2024

    We are so grateful for the support so far! it means the absolute world to our family.

    We are currently looking into another intensive therapy (centre of movement) that is Australian-based. However, they hold a three-week intensive in Rotorua, NZ once a year, which we are currently enquiring about and hoping to be able to get a spot on their waiting list and be able to raise enough funds to make this happen for our daughter!! Whichever one she gets accepted for, we are determined to get her there!!!

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