On November the 20th I will be running the Gosport half marathon for a charitable organisation very close to our family's hearts; Kabuki UK.
Kabuki Syndrome is a very rare genetic condition that affects approximately 1 in 32,000 births world wide.
   My granddaughter Phoebe was diagnosed with Kabuki Syndrome shortly after her first birthday.
   People with Kabuki Syndrome have numerous conditions which includes congenital heart defects, hypertonia, feeding difficulties, cleft palate, speech and language delay, hearing problems, learning difficulties and kidney abnormalities to name just a few associated complications.
   Kabuki Syndrome is complicated and has been underdiagnosed due to the lack of awareness amongst the medical profession.
  I will be running the half marathon proudly wearing my green Kabuki T-shirt to raise awareness and any monies raised will be given directly to the Kabuki UK charity. These will go towards the charities support activities, helping fund equipment and resources to help people just like Pheobe.
  If you would like to know more about Kabuki Syndrome please go to www.kabukiuk.org.uk.
Thank you 💚💚💚