Menkes disease is a devastating genetic copper deficiency. The Menkes gene is carried on the X-chromosome and so the defect is passed from mother to son. Affected boys cannot properly absorb copper and the copper is not correctly distributed around the body. The brain is severely affected by copper deficiency, and this leads to death of the affected boys usually by three years of age. Treatment with copper salts or complexes has only limited success. Professor Julian Mercer's research laboratory in the Centre for Cellular and Molecular Biology, School of Life and Environmental Sciences, Deakin University, Australia, is currently working on improving treatment for this fatal disease.
Kaishi
Akizuki was born on May 8th 2001 in Saga city (Japan), to an Australian
mother and Japanese father. He was a beautiful, blue-eyed, baby who seemed
to be developing normally. It was not until December 2001 at the age
of 7 months that he was diagnosed with Menkes Disease, a rare congenital
disorder
that affects only male children. From January 2002 Kaishi's condition
deteriorated rapidly as the disease took hold and he eventually passed
away in August
2004, three months after his 3rd birthday.Kaishi fought and endured through
so much during his brief life and will be remembered for his beautiful
smiles and incredible courage. Kaishi's family and friends have established
this memorial fund to support the research being undertaken by Deakin
University into this tragic disease, in the hope of discovering ways
of improving
the quality of life for Menkes' boys and their families. Being such a
rare disease, funds for Menkes disease are limited. The establishment
of this
fund in memory of Kaishi honours all Menkes boys - past, present and future.
Kaishi's Story | Donation Form