The Mikaere Foundation supports children living with Nonketotic Hyperglycinemia (NKH), a rare and terminal neurometabolic disorder.

We are walking in the Halloween walk in honor of Mikaere Grant Hulance, who passed away due to complications related to NKH on August 13, 2024. The Mikaere Foundation is a registered charity in England and Wales, charity number 1200720.

The Mikaere Foundation was started by Mikaere's parents in 2017. There is currently no cure for NKH, and medications are inadequate and do not stop the progression or relieve symptoms of the neurometabolic disorder.

Donations will support the work of Prof Nicholas Greene (a professor of Developmental Neurobiology in the Developmental Biology & Cancer Dept at UCL Great Ormond Street Institute of Child Health), who is at the forefront of developing gene replacement therapy and a sodium benzoate alternative.

Mikaere was born with Nonketotic Hyperglycinemia in late 2016. His family spent countless weeks in Intensive Care, hospital and hospice on end of life care. Mikaere, or Kai, was and is well-loved, but living with NKH is not what Sam or Elly expected. They were determined that their little boy would make his mark on this world and wanted to contribute to the NKH community that has supported their little family.

teammikaere.com

instagram: @teammikaere