On the 22nd May 2021, Our lovely daughter Seren has decided to have her hair cut by 12 inches, Jimmy @JimmyChois Hair Salon is going to give her a lovely new style! Seren wants her hair to be donated to "The Little Princess Trust"

Seren has decided to do this on behalf of two other charities, Her school and Cure GM1, funds raised will be split equally.

Seren would like to raise money for the PTFA at her school. Unfortunately last year the PTFA were unable to run a number of their usual events such as their summer and Christmas fayres, which impacted on their ability to fundraise as much as they would have liked. The money raised will support the school in purchasing learning resources.

Seren also wants to do this on behalf of a 6 year old girl that she is friends with who has been diagnosed with a life shortening progressive condition.

Due to the family recently receiving this devastating news they wish to keep things private whilst they digest this awful situation and adjust to their new family life of hospital appointments and worry.

GM1 Gangliosidosis, is an ultra-rare condition that progressively destroys nerve cells in the brain and spinal cord. Individuals with a lysosomal storage disorder lack a necessary enzyme or do not have enzyme in sufficient quantities to break down molecules for proper cell function. As a result, fats and sugars normally broken down can accumulate to toxic levels in the body’s cells and tissues, eventually leading to signs of disease.

As the disease progresses individuals develop a wide range of significant issues that include regression of cognitive development. They lose the ability to walk. They have skeletal abnormalities and poor muscle tone that affects all gross and fine motor skills. They lose the ability to speak. They experience visual impairment that can lead to blindness. They become unable to feed themselves and often are fed via a feeding tube. They experience frequent seizures. Ultimately the life expectancy of individuals ranges from 18 months in aggressive cases to mid childhood and sometimes early adult hood in milder cases.

There is currently no approved treatment for GM1 Gangliosidosis.

Due to recent medical advances around the world, there is now hope for individuals affected by this fatal condition. There are three clinical trials coming into clinic this year for gene therapy that could end the suffering for people with this condition. Seren has decided to donate 50% of the funds raised to the registered charity foundation CURE GM1 to help fund further research and find a cure for GM1.

Cure Gm1 Incorporated Registered charity number 473154419