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Melanie Gedye avatar
Melanie Gedye

BV's Team Mikaere

Raising funds for NKH Research with BV for Joseph's Goal because NKH is horrid + our BV family is not

131 %
£1,977.45
raised of £1,500 target
by 30 supporters
Donate
  • Event: Mikaere Hulance + NKH Research

Joseph's Goal

Joseph Michael Kendrick is 7 years old and has Non-Ketotic Hyperglycinemia, a rare genetic disorder that affects one in 60,000 new-borns. The condition is so serious that less than 500 people in the world are living with it. Joseph’s Goal has been set up to raise funds and awareness into NKH.

Charity Registration No. 1151548

Story

BV have very kindly said they'll match donations that BV employee's make - so generous! We're so grateful. If you're feeling generous, please donate if you're able. Love, Sam, Elly + Mikaere.

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In 2011, in a little BV office in Hammersmith Sam and Elly met for the first time. Fast forward a four years - past many pub visits + legendary BV celebrations - we now have a beautiful little baby boy. 

Mikaere Grant Hulance was born in October with Nonketotic Hyperglycinemia (NKH). It’s a rare metabolic disorder with no cure and limited treatment options. It's pretty grim. 

We've been so grateful for the support we've received over the last three months - it's been a really rough time. We spent a month in the NICU, had a beautiful three weeks at home before we were back in hospital where we spent Christmas and New Years (worst holiday season ever). We've just been transferred into Shooting Star Chase Hospice and are navigating the ins and outs of all the care and medications, loving every moment we have with him.

We’re raising funds for NKH research. Because there are so few NKH research projects every pound we raise has a tangible effect on the research that can be done. Because of this every pound we raise will have a direct affect on Mikaere's future. #dontStopBelieving

We support Joseph’s Goal as they're UK’s only NKH charity. Their donations help fund research with Dr Nick Greene at UCL/Great Ormond St Hospital - Nick + Elly have been emailing and, in the next stage of research Mikaere's DNA may be used as part of a case study. 

Again, thank you to everyone for the love and support. Thank you to everyone who has already donated. Thank you to Bazaarvoice for matching each donation, thank you to everyone for the messages and emails - we can't imagine moving forward without the support we have. 

 Happy New Year! x

PS - Elly is posting updates at rarg.co.nz and on instagram - instagram.com/ellyrarg

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