Cranio Kids fosters fun, friends and craniosynostosis support

by PJ Mullen on May 6, 2010

in May 2010 Nominees, Spread Your Warmth

Our second nominee for Sweatshirt Blanket’s Spread Your Warmth campaign comes to us courtesy of Melanie Harper. Cranio Kids was started by a mother and father looking for information on craniosynostosis. In June 2004 their son Dillon was born and shortly thereafter he was diagnosed with bicoronal and metopic craniosynostosis.

After doing research on the internet, they noticed there were few places online for family networking and support. They decided to do something about it, and Cranio Kids was born. Their goal is to create a caring and educational environment where families can come for support, friendships, and fun.

Melanie was kind enough to share her thoughts on why she nominated Cranio Kids:

Katie has taken CranioKids to a small group of just 40 mothers to one that has over 2101 parents. Through the support boards we strive to share in support and information. Cranio Kids offers a shoulder to cry on and a friend to laugh with. Our group has many nationalities and races and most of us would be lost without the constant support and learning that Cranio Kids has to offer.

As one of the original members I have watched Katie give selflessly to keep the organization running. She raises her two children, works a fulltime job, is a wife to her husband, yet she will always squeeze in time for a distressed cranio friend. Her organization supports CAPPS and shares information and even some members associate with both groups.

However, Cranio Kids is a very important organization of its own. CranioKids operates on its own to offer even more support and resources for parents and families of kids with craniosynostosis, which for many can be a lifetime of treatments, test, and therapies.

With this misunderstood and misdiagnosed condition more support is always better and CranioKids only adds onto our ever-growing cranio-families! Remember like you, all of us have never heard the word craniosynostosis until our own child was diagnosed.

We have been honored to profile two other great organizations that help families and children affect by craniosynostosis. Here is some additional information:

  • Craniosynostosis is the premature closures of one or more of the sutures in an infants skull.
  • This condition happens in one out of every2000 births. With an average of 216,000 babies born daily around the world that means 108 of them could have been born in one day
  • It can only be fixed with surgery yet this is a progressive condition & can only become increasingly worse. As the brain grows rapidly in the first two years of life it will push against all open areas in the skull thus increasing deformity caused by the fused sutures.
  • It can mean a lifetime of checkups and multiple surgeries for some of our families with syndromes. That is why organizations such as CranioKids is extremely important to families.
  • There are 105 known syndromes associated with craniosynostosis.
  • It has been around since ancient times yet many pediatricians and other doctor’s in charge of our children’s health continue to ignore or misdiagnose this condition. Consequences of misdiagnosis can be increased pressure on the brain and lead to learning delay’s, hearing problems, motor delays, and in rare and extreme cases death.
  • It is easily diagnosed or dismissed by a referral to a craniofacial surgeon and CT scan.

Thank you to Melanie Harper for nominating Cranio Kids for the May edition of the Spread Your Warmth campaign. If you would like to learn more about Cranio Kids or their mission visit their website. Cranio Kids can also be found on Facebook.

Got a favorite charitable cause? Spread your warmth!

Through our ‘Spread Your Warmth’ campaign Sweatshirt Blanket profiles worthy charitable causes and organizations from across the country. Each month one of these causes will be voted on to receive a donation of customized sweatshirt blankets from us. Want to nominate a charitable cause for us to profile? Click here for our nomination form.

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