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Margot our 1 in a Billion PCH6 Princess - Fighting a rare genetic condition

  • Intensive Therapy

      14 June 2021

    It has been a long time between posts. Margot has been busy working on her new home therapy program following a two week Intensive we did at home in May. This included three hours of hard work every day with the weekend off to recover. We were blown away with Margot and her stamina, strength, incredible attitude and gains she made over these two weeks. She got stronger, improved her communication with us and truly was a little rock star. Motivating and encouraging Margot for three hours a day was more tiring than I anticipated and I was only the bystander!

    In five weeks Margot and I are heading to Sydney for a three week intensive at NAPA. We are so excited about this opportunity. She will be working very hard three hours a day; on DMI exercises, Occupational Therapy and Speech and Feeding Therapy. We hope to improve her core strength, feeding and communication and many other things. One always needs to have goals to work towards.

    The juggle of meeting all our children's needs feels at an all time high at times but we can't wait to continue to see the improvements that Margot makes and will keep you posted with her progress.

    Thank you all for believing in Margot. Stay tuned for further updates. A few videos of some of Margot's intensive, isn't she amazing.

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  • Some positive news in the pipeline!

      3 April 2021
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    You may have noticed we have been abit quiet lately. There has been lots happening behind the scenes ontop of daily life!

    Earlier this week we met with a lovely lady from Auckland who is looking at doing a Cuevas Medek Exercise (CME) intensive with Margot at the end of April over two weeks. This will help provoke improved postural responses in Margot to promote progress toward developmental milestones and build up her stamina for our next bit of big news...

    At the end of July Margot has been chosen to go to Sydney for a NAPA Intensive over three weeks. We are so proud of Margot for being selected as the first recipient of the Wondergirl/Wonderboy Award. She has been gifted this grant by The Wonderboy Trust.

    This is such an incredible opportunity for Margot and we can’t wait to see the progress she makes with a lot of hard work in the pipeline. Thank you for choosing Margot!

    Lastly we have been fitting in some fun family bike adventures, making memories with this wonderful bike trailer. Margot loves the fresh air, bumps and keeping up with Ella and Hugo.

    Sam has still been training hard, hitting the mountains and racking up the kms. Unfortunately the Motatapu Off Road Marathon and all Motatapu events were cancelled in March but he is finishing his challenge that he set himself with the Arrowsmith Off Road Marathon on Saturday 10th April instead. He’s tired and abit over the training (but that’s how we live every day here!) so he’s pushing through. We are proud of you Sam.

    If you missed Margots story on Seven Sharp back in February here is the link to check it out.

    https://www.tvnz.co.nz/one-news/new-zealand/remarkable-story-kiwi-toddler-rare-genetic-condition-v1

    As always we thank you all for your continued love and support.

    This road is not the journey we wished we were traveling but we are humbled by the love and support and village that is around us to help us continue to ensure Margot lives her best life amongst all the challenges that she and our family face. I can’t say it enough, thank you all for getting behind us and believing in Margot. She’s incredible and her laugh is truly one that fills your heart with so much joy. Much love from us all. Xx

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  • Thank you

      16 December 2020

    Thank you for all your incredible support we have received so far. It’s been great to hear from friends and family near and far and also people we don't know who have got behind Margot’s cause by sharing her story, donating or just reaching out to Sam and I. We are incredibly grateful to each and every one of you. Together this journey is easier, so thank you.

    An example of the type of therapy that we do with Margot everyday is the ‘Lotus Sit’ or as we call it ‘the Genie’. It helps to align Margot’s spine and strengthen her core to help build towards allowing her to sit on her own. This type of therapy is called CME (Cuevas Medek Exercise) Therapy which is a technique designed to provoke automatic motor responses. We hope to add more of these CME exercises with intensive therapy sessions once we are able.

    Sam is busy training for the Coast to Coast 30km run in February pushing himself just as we push Margot and raising awareness of Margot's condition and other rare genetic conditions along the way. The more people who understand a little about what life is like on this rare journey the more support this rare community will hopefully get one day.

    You may wonder why we do so much to get Margot moving when she has such a devastating condition? Well.. the answer is because her condition is so rare no one really knows what her full potential is so we will keep working hard to make sure we achieve that, whatever that looks like. She also had 18 months of her life where she was having 100's of seizures a day, known as Infantile Spasms. Now she is seizure free we are committed to doing as much as we can to retrain her brain. There is lots of research about the brains plasticity or neuroplasticity and using repetitive therapy to learn new things especially in the earlier years of life. We are so grateful to you all for helping us keep striving to get the best for Margot.

    Thank you again for getting behind our little girl and our family and believing in us.

    Aroha nui

    The Toulmins xx

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