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A New Heart for Lily

  • Lily has a new heart!

      7 April 2016
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    We have the most exciting news to share with you! Lily has had her heart transplant in Melbourne and will soon be winging her way back to New Zealand.

    Lily received the gift of life earlier this year! Thank you for all your support, donations, positive thoughts and healing vibes, we can't thank you all enough! It has been a very exhausting and difficult time, but we finally received the phone call and the wait ended, a new life has started, new hopes and new beginnings. We are so utterly grateful to the donor family, no words can describe how thankful we are, you are always in our hearts! Thank you!

    We had to wait until we were able to share the most exciting news due to privacy regulations to protect the donor and receiver family, but here we go, thank you Jesse for a beautiful story about our miracle:

    http://www.stuff.co.nz/dominion-post/news/wellington/78647726/Wellington-toddler-Lily-Leadbetter-has-a-new-heart-and-shes-coming-home

    We are now on the hunt for a new home close to Wellington hospital so if you know of any warm, dry home (that will allow Lily's beloved dog too!) - please get in touch.

    Thank you again for all your support - your donations made such a difference at a very difficult time.

      2 comments  |  Login to leave a comment

    • 08/04/2016 by Meredith

      Fantastic news :)

    • 08/04/2016 by Paul

      Such wonderful wonderful news

      To dare to dream in the face of such adversity and continue to believe takes huge belief and courage, as does the courage and strength and selflessness of the donor family

      Wishing everyone involved in what is truly the greatest gift of all the very best going toward

      Lvad

  • Lily is on the Transplant List!

      22 August 2015
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    After tons of tests, immunisations and meetings, Lily is officially on the Transplant list.

    Lily is stable heart wise and allowed to wait at her Melbourne home for now until a heart is available or her health deteriorates. Miss Lily started walking last month, is showing developmental progress, is still going strong and being her cheeky self. We are currently learning and absorbing information about “Life After Transplant”, it’s a whole new world, with lots of rules, precautions and medications.

    From now on we could receive the life saving phone call at anytime, that a suitable donor heart is available and we have to get Lily ready for surgery ASAP.

    Once the cross matching for the blood is done and the heart is confirmed to be suitable, everything will then go ahead with the transplant. If the cross matching isn’t successful or the heart is too damaged, the transplant will be cancelled and we have to wait again…..

    The chance for that to happen is possible, but hopefully unlikely.

    On a day to day basis we are trying to live a normal life, enjoying the park, catching up with friends and go for little trips to explore Melbourne.

    Regular check ups are required. Every 3 weeks we meet Lily’s cardiologist Rob, we are constantly communicating with Anne the transplant coordinator, checking in for blood test, regular Dentist visits, Physiotherapy and more vaccinations.

    Twice a week we are catching up with other heart families at a morning tea in the hospital, organised by Heart Kids Victoria/Tasmania.

    All in all we have settled into our new life in Melbourne, met amazing people and getting to know the hospital inside and out….

    Today marks Day 12 on the Transplant list, another day of hope and waiting…., but as long as Miss Lily is happy we don’t mind the wait for a perfect new heart for our little sunshine!! It’s not all bunny tails and cotton candy, it’s a hard and rocky road to walk on and you wouldn’t wish this journey on anyone, but as long as you have faith, a positive attitude and love surrounding you, you can grow and learn from experiences and obstacles life throws at you, even if sometimes it doesn’t make any sense…., and you asking yourself: “Why?”, it’s ok to struggle and be angry sometimes, as long as you pick yourself up again and keep on swimming!

    As always - thank you for caring and supporting Lily.

    Follow our Journey on FB for the most up-to-date news and the photos of the first 12 days.

    https://www.facebook.com/pages/A-new-heart-for-Lily-ein-neues-Herz-f%C3%BCr-Lily/1579766808952895

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  • Seven Sharp

      22 June 2015

    Lily has had a very busy few days with media interviews with both the papers and TV.

    You can read the newspaper article here http://www.stuff.co.nz/national/health/69543305/Wellington-girl-with-broken-heart-a-step-close-to-unprecedented-transplant

    Link for the Seven Sharp segment is below.

    http://tvnz.co.nz/seven-sharp/our-donor-rates-really-low-little-lily-desperately-needs-new-heart-video-6343930

    Adam, Veronika and Lily are leaving on Wednesday for Melbourne and will get straight into lots of tests and stressful appointments.

    It has been amazing to see so many generous supporters from all over NZ. Thank you all so much.

    We will keep you updated with progress reports as much as we can. Join us on Facebook for updates.

    https://www.facebook.com/pages/A-new-heart-for-Lily-ein-neues-Herz-f%C3%BCr-Lily/1579766808952895

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  • Off to Melbourne!

      17 June 2015
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    Thank you so much for supporting Lily, Adam and Veronika.

    I am a 'heart mum' friend of Veronika's and I'll be helping her keep the Facebook and Givealittle page up to date so that Veronika and Adam can concentrate on Lily.

    Last week, Veronika and Adam got the amazing news that the NZ Ministry of Health has granted funding for Lily's transplant and so the family are preparing to move to Melbourne in the next week or so. They are just waiting on a date from Royal Children's Hospital.

    As you can imagine - packing up their lives to move to Melbourne is very stressful especially given the short time frames and the difficult journey ahead.

    Lily recently had an early 2nd Birthday party - here is a photo from the party.

    Lily's actual birthday is on the 26th June.

    If you want to stay up to date on their journey to Melbourne - please join us on Facebook https://www.facebook.com/pages/A-new-heart-for-Lily-ein-neues-Herz-f%C3%BCr-Lily/1579766808952895

    Thank you so much for all the love, donations and messages of support you have given - I know it means so much to Veronika and Adam.

    Susan

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