CLOVES Syndrome Community


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About Campaign

  • We are looking to show support for all the CLOVES Syndrome Families and Friends. CLOVES syndrome is a very rare syndrome affecting about 150 people world wide. It is caused by a somatic gene mutation in utero..... Typically PIK3CA.

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More About Campaign

Congenital

Lipoma

Overgrowth

Vascular Malformations

Epidermal Nevi

Spinal Skeletal Anomlies

Each one of this precious gifts are superheroes and showings us that miracles do happen here on earth! Every milestone, every accomplishment is what keeps us pushing forward when times get tough. Each child is affected differently depending on where the gene mutation occurs and when it occurs in utero. This small group of amazing children/adults have been through more procedures and surgeries than most people could even begin to imagine. These superheroes become the strength of their families as they overcome so much with a smile on their face! Please visit Clovessyndrome.org for more information.

Victor.... Is our superhero..... Despite the not so great prognosis associated with hemimegaloencephaly, and several malformations on the right side of his brain, seizures and a facial lipoma he is walking and talking at 18 months, showing the world he really is our superhero making ever lasting miracles!

 

Supporters

  • Kelly & Willie | 9 T-Shirts
    Victor is our hero❤️