Throughout April and May families impacted by PKS are walking, running and rolling wheelchairs to raise funds for PKS UK which supports medical research into the very rare Pallister-Killian Syndrome (PKS). As there are only 30 or so known cases of PKS in the UK very little research exists on PKS. Life for families living with a child with a PKS diagnosis is extremely uncertain. Through the new charity we are raising funds to support research into the many different aspects of PKS to enable a greater understanding of this randomly occuring syndrome.

Pallister-Killian Mosaic Syndrome or PKS happens randomly. PKS is a chromosome abnormality when a tetrasomy of the short arm of chromosome 12 (12p) occurs for no known reason. PKS is a unique, diverse syndrome that raises a lot of questions about care, symptoms and conditions.

Individuals affected by PKS often have some or all of the following characteristics:

- Low muscle tone

- Cognitive and developmental delays

- Diaphragmatic hernias

- Seizures

- Speech delay or absence

- Hearing and/or sight impairment