Boy with rare genetic disease is inspiration behind family fun morning in Dunchurch

Kelly Vickers-Earll's son Oscar was born six years ago after a traumatic birth.

He was later diagnosed with a very rare genetic disorder called CTD, which stands for Creatine Transporter Deficiency which is mutations in the SLC6A8 gene.

The disease affects just 350 people in the world.

The genetic mutation causes symptoms including delayed speech/no speech, autistic traits, delayed development, long QT of the heart, low muscle tone and intellectual delay along with other elements.

Since his diagnosis, Kelly has been raising money for the Association for Creatine Deficiencies.

She said: “Oscar is an amazing inspirational little boy who always has a smile on his face and we couldn’t be any prouder of him.

"We are working with the organisation ACD to raise funds into research to help find more information and a cure for creatine deficiencies in the hope that one day this will help Oscar and many other children and adults with this rare condition.”

The fundraising morning takes place on Saturday, June 28, from 10am to 12.30pm at Dunchurch Village Hall, Rugby Road.

There will be a cake, drink, bouncy castles, soft play, face-painting, raffle, bottle and sweet stand, fire engine and more. Suggested donation is £5.

Donations can be made on the day or before by cash, through the JustGiving link: https://www.justgiving.com/page/oscaracd

Oscar’s family will also be taking part in a sponsored walk in July at historical landmark Stonehenge in aid of the cause.