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TEAMS

Each child gets placed on their dream team as an honorary teammate 

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Children participate in mentor relationships and inspirational events 

Children & families get access to mental health & wellness programs

MENTORS

WELLNESS

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ASSISTANCE

Families get financial assistance for medical & other expenses

Enhancing the Quality of Life

for Children In Texas With

RARE & UNDIAGNOSED

Conditions.

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A CC4C CHILD'S JOURNEY

An average of: 

7.6 Years

Of Testing

8-12 

Physicians

Misdiagnoses

2-3

Social Media Chair: Skylar Salle
Social Media Chair: Skylar Salle
Events Chair: Julia Dean
Events Chair: Julia Dean
Fundraising Chair: Danielle Hughes
Fundraising Chair: Danielle Hughes
Events Chair: Taylor Blackwood
Events Chair: Taylor Blackwood
Education & Outreach Chair: Lauren Poole
Education & Outreach Chair: Lauren Poole
Mission Impact Chair: Cheyanna Frazier
Mission Impact Chair: Cheyanna Frazier
Mission Impact Chair: Sarah Walker
Mission Impact Chair: Sarah Walker
Social Media Chair: Serena Cree
Social Media Chair: Serena Cree
Social Media Chair: Elle Quintos
Social Media Chair: Elle Quintos
Education & Outreach Chair: Allie Morton
Education & Outreach Chair: Allie Morton
Finance Chair: Bobby Grace
Finance Chair: Bobby Grace
Fundraising Chair: Akshay Pradeep
Fundraising Chair: Akshay Pradeep
Finance Chair: Joey Kenis
Finance Chair: Joey Kenis
Avery Dean
Avery Dean
Josie Scheen
Josie Scheen
Morgan Stone
Morgan Stone
Anabel Hughes
Anabel Hughes
Barrett Grevelle
Barrett Grevelle
Caroline Davis
Caroline Davis
Alex Turner
Alex Turner
Anmay Devaraj
Anmay Devaraj
Andrew Penrod
Andrew Penrod
Stanford Penrod
Stanford Penrod
Colin Miller
Colin Miller
Sam Roberts
Sam Roberts
Micah Bailey
Micah Bailey

Americans with Rare Diseases

30 Million

Genetic

80%

Are Children

Most

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WAYS TO GET INVOLVED

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 CC4C Child Spotlight 

 Hi, My Name is Sophia 

I was born in 2010 and have been diagnosed with chromosome duplication 1Q21.1

At 6 months old, Sophia’s pediatrician had a feeling that she may have a genetic disorder, based on her facial features. He referred us to a genetic doctor as well as a cardiologist, due to the sound of her heart. Sophia was diagnosed with an extra valve on her heart as well as a very rare chromosome duplication 1Q21.1. No medical knowledge of her chromosome duplication exists. Sophia is currently in two different studies on her specific duplication and is the lead patient for their medical research.

One year later when she was 16 months old, she had surgery to correct the valve on her heart. Less than 6 weeks later our lives changed dramatically. Sophia went completely non-verbal and was experiencing severe migraines that caused her to be on a liquid diet for the next 2 1⁄2 years. Within 4 weeks we would begin our journey.

From January 2012 to December 2012 we had a team of 12 doctors monitoring and giving us a list of diagnosis. Chiari Malformation, Cranial Stenosis, severe sleep apnea, failure to thrive. On December 12, 2012 she had an extensive surgery on her head and neck to relieve pressure on her brain and neck.

Sophia has a “multiple complicated medical diagnosis”, a combination of 8 as of today. Sophia has the most beautiful outlook on life. She loves people, nature, and animals. She would love to ride a horse one day. She is so expressive in how she describes beauty. I tell people all the time, “Everyone needs a Sophia in their car.”

Read More 

Stories