Our CIMDAG kids

• 

  Benny

  • 2017
  • Germany
  • VPS4a

  Our son Benny is 6 years old. We live in the south of Germany, which is close to the Austrian border. Benny is our only child, and he is beautiful very warm hearted and a sweet little boy who loves cuddles, noises and exercising. Benny struggles to do anything for himself due to the condition called VPS4A de novo gene variant.

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• 

  Joey

  • 2013
  • England
  • VPS4a

  Our Joey is a fantastic boy who through all his challenges has a smile on his face. Joey has such severe epilepsy he can't walk, sit unaided or communicate verbally. He is peg fed and has a VNS, which is a pacemaker for the brain to manage his seizures. He has a life-threatening condition and has a genetic condition that is called VPS4a.

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• 

  Aurelia

  • 2018
  • England
  • VPS4a
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• 

  Joanie

  • 2016
  • England
  • VPS4a
• 

  Lincoln

  • 2020
  • Canada
  • VPS4a