In 2012, in a little BV office in Hammersmith Sam and Elly met for the first time. Fast-forward five years - past many pub visits + legendary BV celebrations - we now have a beautiful little baby boy.
Mikaere Grant Hulance was born last October with Nonketotic Hyperglycinemia (NKH). It’s a rare metabolic disease with no cure and limited treatment options. Only 500 children live with the disease worldwide.
With NKH Kai suffers from frequent seizures and since his birth, we've been in and out of the hospital and even in hospice on an end of life care plan. It is a terminal condition and we’re unsure how long he’ll live.
We’re raising funds for NKH research. There are so few NKH research projects every pound we raise has a tangible effect on the research that can be done and every pound we raise will have a direct effect on Mikaere's future. #dontStopBelieving
We support Joseph’s Goal as they're UK’s only NKH charity and their donations help fund research by Professor Nick Greene at UCL/Great Ormond St Hospital.
He is developing gene therapy options to provide longer term treatment and so far, his research has had promising results. Nick + Elly have been emailing and, in the next stage of research Mikaere's DNA may be used as part of a case study.
In September, Bazaarvoice is planning a 3-day, 78-mile trek along The River Thames to help us raise money for Joseph's Goal and NKH research.
Join us for a walk during the Bazaarvoice b:generous week, and please donate if you're able.
If we hit our target Sam will do the 78-mile walk in fancy dress.
From Sam, Elly and Mikaere:
Thank you to everyone for the love and support we've received since our baby boy was born. Thank you to everyone who has already donated and helped us raise money for Joseph's Goal and NKH Research. Thank you to Bazaarvoice for getting fully behind our cause. Thank you to everyone for the messages and emails - we can't imagine moving forward without the support we have.
You can follow our story at www.teammikaere.com and on Instagram: www.instagram.com/teammikaere/