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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

A Weekend Oasis…every two years

Where would you go to find kids randomly laying on the floor, suction machines and vents whirring in the distance, chewy tubes in all colors, feeding tubes and pumps, walkers, hearing aids, interpreters and every imaginable kind of wheelchair…a hospital? No, a weekend oasis where all of the above and more is the norm. Welcome to the 12th Bi-Annual International CHARGE Syndrome Conference. 1,200 people consisting of individuals with CHARGE, families, caregivers and professionals spending 4 days of fun, education and relaxation. A time to reconnect with old friends, finally meet face-to-face with “cyber” friends and a time to make new friends, all while learning more about this rare genetic disorder that has so profoundly impacted all of our lives.

The CHARGE Conference is not about professionals talking AT you…it is about professionals who care so deeply that many of them have devoted their entire careers to study, observe and wrap their entire lives around our kids, teens and grown-ups who have been impacted by CHARGE Syndrome. It is not uncommon to see these professionals rolling on the floor with our kids, eating meals and spending most, if not all of their free time at Conference with the families, collecting data for research from their hotel rooms and answering questions about “how-to’s” and “what-to’s” pertaining to our kids into the wee hours of the mornings.

The Troupes - Chicago 2015

The Troupes – Chicago 2015

Speaking as a parent, the time spent at Conference is a brief moment in our lives where we don’t have to explain, make excuses or apologize on behalf of our kids. A kid having meltdown? No problem, we understand. Someone pooped in the pool? No problem, it could have been my kid…just wait for the “all clear”. Waiting 15-20 minutes for an elevator because most of the people there cannot use the stairs or escalator? Again, not a problem…just more time to chat with other attendees. I recall sitting with another dad who was holding his daughter in the hot tub while she lapped up the saltwater as I was trying to keep Matthew from shedding his swimsuit. Our conversation never stopped nor broke stride. It was “normal” and it was okay. 20 blenders all lined up on a table in the dining hall? No, not a margarita party…many of our kids are on a blenderized diet and need a little help making their food easier to swallow or put through a feeding tube. A diaper flying through the air…that was Matthew…normal.



An oasis for sure. It has been six long years since we have been able to attend this life giving, refreshing event held every two years. The last one Isaac was a little to fragile to travel. The one before that…we just couldn’t afford to go. In fact, many of those who come from around the globe can’t afford to go…but they make it work. Many receive help to pay for their rooms, some get help with travel others get help to cover conference registration. We have a wonderful CHARGE Syndrome Foundation that is run completely by volunteers. Only one part time employee is a paid position and helps with the office stuff…but the rest of it is all done by people who have been impacted by CHARGE Syndrome. Some have even had to say goodbye for now to their CHARGE child and while they wait to see them again in heaven…they work tirelessly to make the research, the studies, and the grants to fund new doctors who are passionate to continue working to make the lives of those impacted by CHARGE Syndrome more understandable and meaningful. They work tirelessly to connect people with resources we need to raise these great kids who happen to have some unique needs.

Matthew and Keenan, 2007 hanging out in their Superman Jammies

Matthew and Keenan hanging out in their Superman Jammies, Costa Mesa, CA 2007

A heart tugging moment for us and another family came from our boys. Matthew and Keenan met 10 years ago, randomly at a theme park in Miami as we spent some vacation time before a CHARGE Conference. Our families met up again two years later and we spent another week after the CHARGE Conference in California vacationing together. Matthew is 14 and Keenan is 16 and they share some similarities in how they have been affected by CHARGE. They are non-verbal but we felt as if they became buddies during this time together. The last time they saw each other was six years ago at the last CHARGE Conference we were both at. Fast forward to this year…Matthew was having a particularly bad day at “camp” and the only way he was able to relax and get away from sensory overload was to lay on a blanket and pillow in the corner of the room. He was fine unless someone came close to his blanket island. That is until Keenan came over to him after a six year absence. Matthew looked at him then moved over on the blanket and offered Keenan some space…and even part of his pillow. Hannah sent us a picture. We were sitting with Keenan’s parents in a session. Upon seeing the picture and hearing of how this all transpired, both Theresa and Kim (Keenan’s mom) were weeping uncontrollably…Matthew has a friend. Keenan has a friend. Grab a tissue. Both myself and Louis (Keenan’s dad) were able to compose ourselves…until later.

Matthew and Keenan on their blanket oasis, Chicago 2015

Matthew and Keenan on their blanket oasis, Chicago 2015

We learned a lot again this time at Conference from our interactions and the sessions we attended. But, the entire conference and all of the logistics of care, equipment, supplies and the drive was all worth it just for this brief interaction. It was priceless.

I mentioned above about the many who attend this life-building conference who do it out of necessity but not necessarily out of an abundance of resources. Many of us cannot afford it financially. In fact, the conference registration fees only cover a small portion of what it takes to pull off a conference of this size. We are told that the conference registration fees don’t even cover the food. All of the remainder costs of the conference, the research, studies and scholarships all come from fundraising efforts of the members of the CHARGE Syndrome Foundation and other scholarships from individuals, educational resources and businesses. Other ways funds are raised are by families like our own who sell t-shirts, bracelets, arrange 5-K runs, dinners and many other creative ways to help fellow families have an oasis every two years. You may be asking yourself how you can help. There are two ways you can help on behalf of Isaac and Matthew. Buy a copy of my book Strength to Care. For every book sold on Amazon from now until the end of this year I will donate a portion of that sale to Team Strength to Care in the Fundraiser set up by the CHARGE Syndrome Foundation called the 7th Annual Charge it for CHARGE. Or, go directly to the 7th Annual Charge it for CHARGE donation page. I have created a group called Team Strength to Care for Matthew & Isaac. You can donate directly there on behalf of Matthew & Isaac. I set the bar kind of low at $1,000. My hope is that just like Isaac and Matthew continue to shatter expectations and goals, Team Strength to Care will do the same. Donated funds are tax deductible (donated on the Strength to Care Charge it for CHARGE page). The donations made to Team Strength to Care on behalf of Matthew & Isaac do not go directly to them. It is a fund that will collectively be used by the foundation to help all families. There is a link to my book on Amazon on this page if you want to help in that way. Otherwise, go directly to the Team Strength to Care page for the 7th Annual Charge it for CHARGE by clicking on the link in the column to the right. And yes…please share this post using the “share” buttons below.

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