The weather this time of year is one reason many of us call San Antonio home.
It is perfect for a bike ride. Conrad’s accident happened when he was only 17 months old,so he was never able to experience the sensation of riding a bicycle…until now!
A company called Freedom Concepts builds custom bikes that allow kids of all abilities to ride. Freedom,as the founder defines it,means mobility. Safely strapped to the front,Conrad’s leg move as I,or as you will see in the videos,his brother Garrett,push the pedals. The ride not only provides the joy of movement but also essential therapy to improve Conrad’s range of motion. Innovation propels potential. It is inspiring to interact with a company who dedicates their intellectual capital to helping kids like Conrad enjoy life. (Freedomconcepts.com)
Dedication cannot be better defined than through a power couple –Michael and Janelle Hennessey. The organization they founded,Iron Man for Kids,paid for Conrad’s bike. While their major focus is to raise awareness and support for the chromosomal disorders/Trisomy,their passion lies in respect for all kids. “Spin for Joy” raises funds to purchase special needs bikes to get children and families out together to “feel the wind on their face,energy in their legs,and joy in their hearts!”(ironmanforkids.com). Thank you!
Thank you also to Bob Rivard who helped transport the bike. And to Bike World who made the final adjustments for the bike to be ready for its inaugural ride at Siclovia.
Happy Easter! I believe Jesus’ story can resonate with all religious doctrines. How truth of purpose triumphs over temporary suffering and how love liberates us from any challenge.
Thank you for keeping the faith that all is possible. Conrad rides —what’s next!
Happy New Year! Today we mark the anniversary of Conrad’s accident –the beginning that came so close to marking the end. Conrad not only survived,but continues to thrive,as those who interact with him can attest.
In our journey to recovery,we have grown to understand the complexity of Conrad’s condition. Although I never thought it was an easy fix,I am learning more about the intricate workings of the brain. The more I learn,the more I am grounded that we have so much more to learn. Damage sustained is not easily recovered,however researchers are discovering more ways to harness the vast potential of the brain to heal. This prospect breeds hope and warrants investment.
In 2014,we will continue efforts to advance the medical understanding of Anoxic Brain Injury (ABI). We have several treatment options that show strong potential and we plan to launch clinical studies to formally measure their impact. ABI is an understudied condition and families are still given little hope and limited guidance. I aim to continue to find partners to help me change that.
The book The Impossible Will Take a Little While provides stories from leaders who have tackled obstacles to achieve what were deemed impossible goals. The common denominator is hope.
Hope is a dimensional of the soul… It is an orientation of the spirit,an orientation of the heart. Vaclav Havel –
I must admit that at times,holding the beacon of hope can take its toll. But divine intervention has a way of stepping in to rejuvenate the cause. Please read the story of how my family received this gift of renewal from a family near and dear to San Antonio’s heart:
The Shops at La Cantera produce a beautiful event called Holiday Mingle and Jingle – a celebration benefiting local charities. Conrad Smiles,the not for profit I founded to promote research on Anoxic Brain Injury,was selected for 2013. The organization with most attendance at the event is awarded $1000. It was a cold night in San Antonio standards. So thank you to all that braved the weather.
One of the other not for profits honored was Viola’s Huge Heart Foundation established by the Barrios family in memory of their mother,Viola Barrios,the founder of Los Barrios Restaurant. Louis Barrios and Diana Barrios-Trevino represented the organization that evening. Louis spent a lot of time with Conrad and my parents. He shared the story of his mother’s tragic accident and expressed how the experience rallied his family to continue her work of enabling others to help themselves. Louis spoke softly to Conrad and you did not have to hear the words to be warmed by the interaction. Conrad heard and understood.
At the close of the event,Michelle,the representive of the Shops at La Cantera informed me that Conrad had won the additional $1000 for most attendance by one ticket. It turns out that the Barrios family had purchased this winning ticket. They were so touched by Conrad’s story that they were willing to forego the prize. They held true to their mission to help those who face insurmountable obstacles in life,by providing hope. Please join me in thanking the Barrios Family.
We dedicate our efforts in 2014 to Viola’s huge heart. We will stay oriented to our hearts’ mission of hope. And we plan to take science with us!
Thank you for remaining on the journey with us.
Isn’t it magnificent to have a holiday that reminds us to count our blessings and focus on what matters in our lives. It is a day that unites us by the force of gratitude.
In the last update,we shared that Conrad had just undergone SPML (Selective Percutaneous Myofascial Lengthening). The minimally invasive procedure released tendons in his hips and legs to allow the muscle underneath to stretch and lengthen. We were so pleased with the results that we had Dr. Yngve perform the same procedure on his wrists. You may have noticed that Conrad’s wrists,fingers and arms had the tendency to curl inward. Only 2 months post,we have seen a marked difference in his range of motion. Most notable is his long beautiful fingers that now open and rest in a more natural position.
We are also making slow and steady gains on the research front. The team is currently analyzing the functional connectivity gathered from the MRI scans. This phase is just as much art as science. When comparing connectivity of kids with Anoxic Brain Damage to their typically developing “matches”,there are a lot of moving pieces. If they approach the analysis in the wrong way,they might get incomplete or even incorrect results. To make sure this doesn’t happen,they are doing the analysis multiple ways. Good news is that even at this very preliminary stage,it is apparent that MRI of ABI children can provide useable data about preserved cognition.
In parallel,I have enlisted partners to start working on the next phase of research –treatments/therapy targeted to the areas of the brain with the most potential to recover. Our partners come to us from the Child Neurology Foundation,an organization focusing on research and education related to pediatric neurology. We are developing the plan to recruit researchers interested in determining the best treatment options and start framing the next study. Progress is that for which we are thankful!
Those in San Antonio,please join us. Conrad and Conrad Smiles fund are being honored at La Cantera’s Holiday Mingle &Jingle. Conrad Smiles is a not for profit supporting research to improve the understanding and treatment of Anoxic Brain Injury. The event is next Thursday,December 5,6-9 p.m.,at The Shops at La Cantera,with 100% of proceeds from ticket sales benefiting Conrad Smiles. Learn more and purchase your tickets at:http://www.conradsmiles.com/holiday-mingle-jingle/ http://www.conradsmiles.com
Thank you,thank you,thank you. Specifically,I am grateful for you who:
- Share ideas and information that can help Conrad
- Hold belief in Conrad’s unlimited potential to recover
- Make our days brighter with your laughter and friendship
- Provide a shoulder (or glass of wine) when times seem tough
- Celebrate successes
- Stimulate Conrad
- Teach Conrad
- Use creativity to include Conrad
- Bolster faith
- Remind us that we are not alone in our journey
There is still half of summer left! We hope you enjoyed the first part. Here are a few highlights of ours. Thank you for your steadfast interest in and support of Conrad’s recovery.
The research study has officially moved to the analysis phase!
If you recall,the study utilizes a special type of brain imaging called resting state functional MRI. The approach involves comparing the brain images of a non fatal drowning survivor to that of a typically developing child who is the same gender and age. They have successfully scanned 11 “matched” pairs,2 more than they targeted. Thank you to the families who volunteered to be a part of this historic study,the FIRST research project to address brain injury in child non fatal drowning cases. Families brought their survivors from Colorado,New Jersey,Oregon,Utah,Wisconsin and throughout Texas. And thank you to San Antonio for providing all of their typically developing matches!
The research team can now use the images to analyze brain activity to better understand how the injured brain is “working” compared to a child without injury. The next milestone – stay tuned.
Hip Hip Hooray
Conrad had hip surgery a couple of years ago because his hip was dislocated. The fix did not stick and his hip came out again and was a source of extreme discomfort. We found a doctor in Houston,Dr. Yngve,who is pioneering an established procedure in a new way to address issues with children whose orthopedic issues are neurological in origin.
On June 27th ,he performed a procedure called SPML (Selective Percutaneous Myofascial Lengthening). He releases Selective tight bands of tendons called Myofascial, which allows the muscle underneath to stretch and Lengthen using small incisions (Percutaneous) versus large open scalpel cuts. So it is not very invasive and does not have a long recovery. You may recall the huge cast from his first surgery. After this procedure,Conrad only had to put up with some soft casting the first few weeks. Our first priority was to relieve the pain. However,his hip was limiting his movement. It is our equal hope that the procedure will help him to move more freely on his own. Conrad sailed through the procedure and we are very pleased with the results so far. www.utmb.edu/ortho/faculty/DYngve.htm
camp CAMP (Children’s Association for Maximum Potential)
Conrad enjoyed his second summer at camp CAMP,this time with Garrett in tow. This year Matt and I wasted no time. We embarked on our first real vacation together in over 9 years,enjoying a few fun and relaxing days in Guadalajara. Judging from the pictures,the boys did not seem to notice we were gone.
Last June I sung the praises of this camp. www.conradsmiles.com/2012/06/28-june-2012/
This year I will be sharing our families’ experiences as a speaker at the CAMP fundraising gala on Sept 7th. Please let me know if you are interested in supporting and/or attending.
Happy Birthday Conrad
Conrad turns 11 on July 24th. We celebrate the entire month,so if you are around stop by!
Over 44 years ago,Eunice Kennedy Shriver had a vision to help people with disabilities discover what they can do instead of dwelling on what they could not do. Her first step came in the form of a summer camp for young people in her own backyard. Her drive for opportunity eventually grew into the Special Olympics movement,now the world’s largest sports organization for children and adults with differing abilities,serving more than 4 million athletes in 170 countries.
Last Thursday,Conrad participated in the annual Special Olympics Field Day. Emma Matthews and Sam Hodgson were selected to attend based on their compassion and friendship with our Special Olympian. Emma and Sam have been a steadfast and encouraging presence in Conrad’s life since they met in first grade. I believe that if Ms. Shriver were alive today,she would feel pride that the honor was placed and so graciously received by these kids.
Many of Conrad’s peers use their creativity and hearts to include Conrad in activities. Their resourcefulness challenges me to continue to overturn the stones in the quest to help Conrad and other children like him to reach their maximum potential – no limits!
One step we have taken is to collaborate with an organization called Hope4JD (https://www.hope4jd.org) to develop the Nonfatal Drowning Registry and Network (www.nonfataldrowningregistry.org). The mission is to advance the understanding of anoxic brain injury and encourage development of treatments and interventions that promote a healthy and productive life for all people who survive a drowning accident. Our goal is to register ALL nonfatal drownings to help quantify the impact of the condition and give power to our voice.
Thank you Ms. Shriver for the demonstrating the power of taking a vision to reality. And thank you to all the people,young and old”er”,who bring joy and laughter to our journey.
Enjoy the photos!