Category Archives: Stories

Happy 10th Anniversary, CPFN!

By Lee Vander Loop

What an exciting milestone! As an editor of the Cerebral Palsy Family Network, I’m honored to write this blog to commemorate this anniversary and reflect on this past decade and what it has meant to me to be a part of this wonderful organization.

Before starting, I want to take this opportunity to thank all the founding families that make the CP Family Network possible. Without their unselfish contribution and support, we would not have this amazing resource for families.

To our families around the world, thank you for sharing your stories and your amazing Hero’s with us! You are the reason our network is the largest web-based organization in the world! You are the reason we exist.

In writing this, I was asked what, personally, were some highlights of the past 10 years of my role with CPFN.

More Than a Community, We Are Family

First and foremost, the highlight for me has been meeting and interacting with all the remarkable families that make up the CP Family Network. I’m in awe of what CPFN has become. Every day is a ‘highlight’ for me as I experience the daily joy of reading all the comments of love and support among our families. I have the honor of assisting families in their search for information and the pleasure of viewing the photos of all our inspiring and courageous Heroes.

Another unequivocal highlight through the years would be the outpouring of love, support and kind words I received from this community, after the passing of our precious Danielle. Thank you. Your thoughtfulness gave me strength and comfort and will forever be remembered.

When our daughter was born with CP my resources for information consisted of a book on anatomy and physiology and the Yellow Pages phone directory. Home computers hadn’t yet evolved and I was lost.

It’s Our Purpose to Serve You and Your Children

When I was approached by CPFN to join their team, it was an honor. Our partnership has provided me an opportunity to save other families from the frustrations I faced in my search for answers. Being editor of CPFN has enabled me to help other families acquire the information, network and support needed to empower them in caring for their children with CP.

CPFN’s quest has always been to unite families with the common goal of helping to improve the lives of children with cerebral palsy. My vision as Editor has become a reality! CPFN has grown to encompass families the world over, sharing their knowledge, stories and support.

I’m so proud and honored to be a part of this family!

Thank you for 10 Great Years!

Camp Smiles – One Year Later!

By Anita Howell

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One year, dozens of hurdles, a couple of panic attacks, a few doubts and thousand of smiles later, we have an amazing annual camp for children with Cerebral Palsy or Down Syndrome – Camp Smiles!!!!!

At the end of the first day, every hurdle, panic, and doubt was completely forgotten. All that remained was an overwhelming joy at seeing the end results and future potential. The children had fun, the families had a much needed break, and the counselors knew they were indeed preparing for a career they would love. On the last day of camp the counselors, students, and parents all cried and were eager to be a part of camp the following summer.

How did we develop the program?

Dr. John Delport and Dr. Nanci Howard, special education professors from Coastal Carolina University, developed the daily structure and schedule. The children were broken into three groups that rotated among four blocks of activities, 1) Music Therapy, 2) Adaptive Physical Education, 3) Art, and 4) Literacy.

Dr. Delport hired students from within the special education program at the university to be counselors. This also included 4 lead positions, one for each block of activity, and those leads planned the activities for music, physical education, art, and literacy. The only rule he gave them was to make sure that campers and staff had fun.

Dr. Howard recruited students from her graduate level class, who were mainstream teachers, to volunteer during the summer as a part of their curriculum. Each week they wrote a synopsis of what they experienced and the common theme was “I had no idea that it was possible to make such an impact on special education students” or “I now see these children differently. I see them as individuals with varying personalities. I see their humor, their own way of communicating, how easy it is to make them smile and laugh, and how aware they are of those around them.”

Additionally, Dr. Delport wanted to include special activities through local groups such as Young Talkers Speech Therapy, Therapy Dogs International, Ripley’s Aquarium, and even a Storm Trooper.

Everyone from the leaders, counselors, campers, families, and outside special activity groups are eager to participate again this year.

How did we find the funding?

We successfully reached out for funding and support from:

  1. Coastal Carolina University – Their Literacy Program provided financial support.
  2. Local Media – Covered the story to bring awareness to the financial need.
  3. Knights of Columbus – To qualify be sure they know there are developmental delays.
  4. Local Foundations – Google “Foundation” along with your county.
  5. Seamless Summer Feeding Program – Checked with our school district for participation requirements. This is a federal program that will deliver meals and snacks daily for all of the children in our program.
  6. Local churches – Had our team reach out to their connections.
  7. Go Fund Me – Included pictures of our smiling campers, the more the better.
  8. Fundraisers – Local businesses started their own fundraisers on behalf of Camp Smiles.

Can you do this?

Definitely! You’ll be surprised at how many people are willing to help when you help them figure out a way. In the end, we had to reduce camp by one week to balance the budget, but that was still 5 more weeks than the children would’ve had if we hadn’t taken the leap of faith.

Please support Camp Smiles and share our pages with your church, friends, co-workers, employers, and family. They are:
Please don’t hesitate to call or email with any questions. My cell number is 843-254-2804 and my email address is
Camp Smiles Needs Your Help for Cerebral Palsy
Anita Howell has been married to Wes since 1988. They have a daughter named Emily who is currently attending college, and a son, Ryan. She writes, “Though I have never been a medical, research, or legal professional, Ryan’s stroke at birth has thrown me into the deep end of the pool for all of it. It was quite overwhelming in the early years; however, God has made Philippians 4:13 very real throughout my journey.”

Pediatric Stroke Clinical Trial

By The Cord Blood Registry

Stroke occurs when blood flow is interrupted to part of the brain, leading to the destruction of brain cells. The risk of a stroke in children is greatest in the first year of life, and peaks during the perinatal period, roughly the weeks before and immediately after birth. Now, families who have saved their children’s cord blood with Cord Blood Registry® have access to a new use for the stem cells. A new clinical trial at the Florida Hospital for Children will investigate using a child’s own cord blood stem cells as treatment after a pediatric stroke.

Recruitment is underway to enroll 10 children between the ages of 6 weeks and 6 years who have experienced a stroke in utero or immediately after birth, and who have a CBR-processed cord blood unit which was collected at birth. Subjects will first receive a baseline neurologic evaluation which includes brain imaging, evaluation of epilepsy, nerve impulses, and bladder control issues, which will help assess the overall severity of the stroke’s impact prior to treatment. After this evaluation is complete, eligible patients will receive a single autologous stem cell infusion, with follow-up testing to occur after six and 12 months.

Read the full story.


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