My wonderful friend Laura, and her husband Moss, had their beautiful baby boy Teoman Sayin (Teo) on 27th September 2022. At just 9 days old, and after a stay in the NICU, Teo was diagnosed with NKH.

Non-ketotic hyperglycinemia (NKH) is a rare, genetic, metabolic disorder. NKH causes multiple complications including severe delays in development and mobility function. Epilepsy and seizures are also one of the most common symptoms which causes major damage to the brain and organs throughout the body. It’s a traumatic illness for everyone involved. NKH occurs due to genetic mutation.

Whilst there is no cure for NKH at the moment, there is research being undertaken that is incredibly close to a breakthrough in gene therapy. The development of gene therapy for NKH would save countless lives and improve the quality of life for babies, children and their families across the world. Without gene therapy Teo is unlikely to reach many milestones, such as holding up his head, sitting, rolling over or walking and life expectancy is short. Unfortunately the rarity of the condition means funding is limited. Nearly all funding for gene therapy comes from private sources such as the families.

On the 7th April I will be running the London Landmarks Half Marathon on behalf of the Mikaere Foundation and I would love to ask for your help in raising funds towards research for gene therapy for NKH.

“Founded in 2017 (previously as the Foundation for Nonketotic Hyperglycinemia), the Mikaere Foundation is a UK-based charity that raise funds for NKH Research, to further the knowledge of and bring about effective treatment options. We also provide information and support to families living with NKH. It’s not an easy path, and because of the rarity of NKH, information can be difficult to come by. We hope to change that.”

Thank you for your donation :) these vital funds will help Teo and babies like him across the world live happier, healthier, longer lives.