Hi. I’m doing the London Landmarks Half Marathon in April to raise money for The Mikaere Foundation.

I want to help find a cure for my grandson and all the kids with NKH.

My Grandson Mason has a rare genetic condition, NKH (non-ketotic hyperglycinemia). At present there is no cure but so close to finding a cure.

I want my grandson to be here to receive gene therapy and be able to live a long and fulfilling life.

NKH usually affects infants and children, appearing shortly after birth. It is a genetic disorder which prevents their bodies from processing glycine.

Glycine (amongst other things) is a neurotransmitter – sending signals in the brain and around the central nervous system (especially in the brainstem and spine). It has several functions involved in the processing of motor and sensory information (such as movement and vision).

Mason is the size of a six year old but his development has never gone past the newborn stage. He has daily seizures ranging from 5 to 15 times a day, scoliosis, dislocated hips, unable to sit up, grab items or talk. He is fully peg-fed nil by mouth, he has recurrent chest infections. He has so much medical equipment which include an sats machine, suction machine, nebuliser, feeding pump and is a full-time wheelchair user. He can mainly only see lights and is registered blind, and has so many medications.

With all that going on, he still finds so much joy in life. He enjoys sensory lights, stories, being by the water, and loves hearing his brother. His favourite places are his hospice and going to school when well.

His life is still very unknown, today or tomorrow is not a given. He has just turned 6 and I want a cure, I want my grandson to live his best life. He is such a joy in my life and I can’t imagine it without him.

So, with all that said here I go again. This is my second half marathon I would have done to help my little bee. Not that I will be running, just walking and maybe a jog now and then but I will do anything to help raise money to fund a cure for NKH. I’m not doing it alone, Masons mum (my daughter) and some friends are also doing it.

Please donate if you can, no matter how small and share this page.

For more information about Nonketotic Hyperglycinemia (NKH), please visit foundationnkh.org or download our information booklet:

Thank you for reading