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Frankie Watson

  • Raising funds for toddler By Ashleigh Collis 9:48 AM Wednesday Oct 12, 2016

      14 October 2016
    Main image

    Tararua Educare Children's Centre recently held a bike-a-thon raising $250 for Frankie Watson, a two-year-old Levin boy suffering from a rare lung disease that means he is connected to an oxygen tank 24/7.

    Without cure or treatment for Neuroendocrine Hyperplasia of Infancy (NEHI), Frankie Watson relies on his family to carry his oxygen tank everywhere, limiting the toddler's mobility.

    Frankie is the only child in New Zealand who has this condition and little research has been done on the disease. The Watson family needs to raise $20,000 to train an assistance dog that can carry small oxygen cylinders so Frankie can move around more freely.

    Half the funds have been raised to date.

    Frankie's mum Nadia said the support from Tararua Educare was overwhelming.

    "It's lovely to see how wonderful and supportive a community can be."

    At Tararua Educare, where one of Frankie's sisters goes, team leader Kimberley Frecklington said supporting families, was part of the character of the centre.

    "If we can do something to help out a family in need then we go for it," she said.

    Frankie's assistance puppy, Mali, is currently being trained by Assistance Dog New Zealand. Mali is a Kiwi Pride Australian Labradoodle, a purpose-bred dog that is allergy-friendly. His specialised training will involve small tethered weights that will be slowly increased, preparing him for carrying Frankie's oxygen bottles - cylinders each weighing just over two kilos.

    "We are taking a chance on the unknown but we have faith that Mali will complete his training and be awarded public access to help Frankie's mobility," said Mrs Watson.

    - Horowhenua Chronicle

    By Ashleigh Collis

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  • Oxygen-toting pup to help sick Kiwi toddler

      22 July 2016

    By Melissa Davies

    A labradoodle puppy has been picked out to do a very special job for a little boy from Levin.

    Frankie Watson has an extremely rare lung disease which means he's constantly on oxygen tanks that have to be carried by his mum or dad - but not for much longer.

    "Having Mali assisting Frankie is definitely going to change and improve his ability to just basically be mobile like any other child," says mum Nadia Watson.

    Frankie is the only child in New Zealand known to have Neuroendocrine Hyperplasia of Infancy (NEHI).

    It means he's not getting enough oxygen into his lungs to grow so 24 hours a day he's hooked up to tanks his parents wear in a backpack.

    Eventually that'll be Mali's job, to carry two 2.5kg oxygen cylinders for Frankie.

    Ms Watson was inspired by an assistance dog in the US.

    "There's a little girl in the states called Alida Knobloch, she has NEHI the same as Frankie," Ms Watson says.

    "And I thought if they could do it, so could we."

    It looks like Mali and Frankie will be just as protective of each other - talk to his sister about the puppy, and Frankie chimes in.

    "I think it's beautiful," Ms Watson says.

    "I just love the picture that Mali doesn't just bring for Frankie but just as a family. When you've got a child with a disability - it just brings a sort of a unity together."

    The pair have to part again for now as Mali finishes his training, but within the year, they'll be literally inseparable.

    The Watson family and Assistance Dogs NZ need to raise $20,000 for the training and ongoing care of Mali.

    They're raising funds on Givealittle and the Assistance Dogs NZ website.

    Newshub.

    Read more: http://www.newshub.co.nz/nznews/oxygen-toting-pup-to-help-sick-kiwi-toddler-2016072117#ixzz4F4gm21pm

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  • Name the dog

      22 May 2016

    Hey everyone,

    We’ve got some exciting news for donors. You will all know we are extremely privileged to have a dog on the assistance dog programme.

    Thanks to Assistance Dogs NZ, the precious labradoodle pup is being trained and will carry Frankie’s two smaller oxygen cylinders.

    But we need a name for him. And that’s where you come in. If you have donated to the cause we are offering the opportunity for you to give our little fella his new moniker.

    For training purposes, the dog’s name will need to be short, so just one or two syllables please. And because he is already in training, we need get the name organised pronto. So please put your thinking caps on and get your names to us by Friday 17 June.

    Your reward: the satisfaction and glory of naming our little helper and having your name published on our Give a Little page.

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    • 22/05/2016 by keith

      Ziggy...

  • Update on Frankie and his progress 12 May 2016

      12 May 2016

    Thank you so much for your Support thus far. We really feel we are making good progress with our little service pooch safely on board and some other great news to tell you about.

    Our family is truly grateful for each and every person who has helped us. We thank you for taking an interest in Frankie’s rare and unique story.

    We are now 18 months into Frankie’s life and he is still dependant on Oxygen 24/7. Our pursuit of having a furry friend to assist Frankie’s development is well under way and going successfully.

    Working towards a service (assistance) dog has been a labour of love for our boy. The wee boy, is on the ADNZ programme.

    Cocoa started this journey with us but unfortunately broke his leg due to unfortunate, random puppy antics. Happily, Cocoa is set to go on and continue his legacy as a therapy dog, in NZ.

    Our initial fund raising goal was to attend a conference in Boston USA to help us gain support and understanding for this rare lung disease and what our future might look like.

    New goal

    However, our mission has now changed with the focus more on how we can better Frankie’s life on a more practical level. Day-to-day he is being tangled and limited by a tubing length and heavy tanks which can’t be moved by him. So we are keen to help make his childhood development as normal as possible and not be limited by the lengthy plastic tubing connected to him 24/7.

    We continue to raise funds for a wonderful cause ADNZ, $20,000 is what is required in order to train Frankie’s service dog. These funds will go to ADNZ directly. The dog will carry two small oxy tanks to enable him to have greater freedom to do the things kids love to do - simply playing freely, attending school when he is old enough and not being limited by his icy tanks and tubing. This is so important and valuable at this stage to Frankie and his progress.

    Mothers network

    Thanks to the internet, Nadia has reached out and become part of a network of mothers alike from right around the world. These people connect and share their own stories and support and encourage each other and collectively answer any questions they may have.

    Nadia also has been asked to be the New Zealand representative for chILD in a joint position with Australia. Our heart is not only for our son, but also for the greater Cause & supporting a greater good work.

    We are excited and look forward to the new chapter which is unfolding. God bless you all and thanks again for all your prayers, donations and support in unique ways

    Love Ryan, Nadia, Poppy, Olive and of course Frankie Boy

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  • Update on Frankie's condition

      10 August 2015
    Posted by: Ryan Watson
    Main image

    Following Frankie's lung biopsy, Nadia & Ryan finally have Frankie's Diagnosis.

    He has, Neuroendocrine Cell Hyperplasia of Infancy!!

    Known as NEHI.

    It is a very Rare Lung Disorder and is classified within the group of children's instistitial lung diseases (chILD).

    There is currently limited information on the long term prognosis as NEHI has only been recently recognised (labelled in 2005).

    The symptoms usually decrease over time & are not progressive in nature (which is great). The biggest challenge is keeping him as virus free as possible as obviously any illness can be detrimental to Frankie's health. It is said that his lungs will most likely never be 100% so for how long oxygen is needed is still unsure.

    So the aim is still to get to America, now in 2016, for many reason's - one being that Frankie is the only (chILD) kid in NZ.

    Frankie's just started crawling & its a nightmare with his tubing. We are still looking into a service dog (many hurdles to overcome there). We do remain hopeful for how this would help him in his development when he is only with a short reign - A knotted one at that!

    You can see Alida in the clip below, she too has NEHI

    and is our inspiration!

    Any questions that you may have, we will happily answer :)

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  • Update on Frankie :)

      11 July 2015
    Posted by: Ryan Watson
    Main image

    The blood test that was sent to America to John Hopkins University Hospital was to find out if Frankie had a 'Surfactant Protein Deficiency of the lungs'. These results showed he doesn't.

    Frankie then went back to Starship hospital in late June and underwent surgery to have a Lung Biopsy. Currently Ryan & Nadia are awaiting the results of this, which could take up to 3 months. Once these are back they hope to have a better idea of what lies ahead.

    Due to the timing of Frankie's lung biopsy Ryan & Nadia decided that International Travel in July 2015 was unwise so have decided that 2016 is the year for that adventure!

    Our next big project is securing a 'Service Dog' for Frankie. Currently we are waiting for a puppy, a Retro-Doodle, to be born (hopefully in December) which will be the next addition to the Watson Clan. This dog is specifically bred low allergenic, non-shedding and will be trained to carry Frankie's oxygen tanks in a special vest. This will be super important to Frankie's mobility as he gets older and more energetic. We need to find a specialist dog trainer to come on board in this quest to help Frankie grow up as normal as he can be – running, playing outside etc. Obviously the logistics of tubing and cumbersome oxygen tanks means without a service dog Frankie would have a 'short leash', literally! There is also the opportunity for someone to 'sponsor' Frankie's Service Dog, this could include food, training, etc.

    Your continued support and prayers are so important and we are extremely grateful and humbled by the support so far x

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