Every once in a while you meet a person that has a profound impact on you and you immediately realize that there are not enough of these people in the world and that the world would be a much better place if there were. About two months ago, I was lucky enough to meet one of those people. A person who is the epitome of inspiration and positive energy. One who gives and gives and gives and expects nothing in return. Someone who will always find a silver lining in any scenario. A person you just want to know more and more about…
So today I introduce you to Smarty Mom, Kathy Crisp. Kathy is a Charlotte native and is married to an equally incredible man, Matt. Kathy and Matt have a 10 year old boy named Alex.
Let’s start with Alex. Tell us about Alex.
Alex came into our world on February 20th 2003, after my husband, Matt and I went through nine times of intrauterine insemination. Our first few months with Alex were pretty uneventful. At the time, our only challenge was that his Daddy was a quadriplegic due to a car accident. Who would have known that there would be so many more challenges ahead of us? When Alex was four months old, we began to question things with Alex, the first being Alex’s low muscle tone and no head control. His eyes were also turned in and he suffered from severe reflux. From that point on, our world was turned upside down. Over the next three years we strived to find the cause of many different symptoms that began to emerge. Alex developed constant involuntary movements, seizures, severe scoliosis, paralysis of eye movements, reactive hypoglycemia, respiratory issues and severe hypotonia. After numerous blood tests, EMGs, a nerve conductivity test, two lumbar punctures, two muscle biopsies and two MRIs, we finally found an answer. Alex was diagnosed with Mitochondrial Encephalomyopathy, Complex III.
What is Mitochondrial Disease?
Mitochondrial Disease is basically a defect in the way we process our energy and mitochondria are considered the powerhouses in our body. If there is a defect in our mitochondria, any of the organs can be affected. By the age of 10, one in 4,000 children in the United States will develop mitochondrial disease. Children and adults have varying degrees and symptoms of the disease. And prognosis is unknown. Mitochondrial disease may cause strokes, seizures, gastro-intestinal problems, vision problems, hearing problems, failure to gain weight, heart and kidney problems, heat and cold intolerance, hypoglycemia, movement disorders, muscle failure, immune system problems and liver disease. It doesn’t paint a pretty picture.
How is Alex today?
He still has little head control and cannot sit or stand unsupported. Speech and eating are very difficult for him, due to his movement disorder and lack of energy and muscle control. And at 10 years old, he is only a mere 36 pounds and 46 inches on a good day. To supplement his nutrition, Alex is also fed through a continuous GJ feeding tube. And through this tube he takes 22 different medications a day. Due to the GJ feeding tube and Alex’s complicated GI system, he has to undergo surgery every three months to replace his tube under anesthesia. Alex has spent countless days in hospitals and numerous surgeries that I have lost count of. Finally we are completely back to baseline, just in time to possibly have Scoliosis surgery this fall or spring of next year. That surgery scares me. The risks are ugly. And believe me, Alex is a risk.
I have questioned God many a times in the past 10 years. I’m not sure how you couldn’t question His plans for our family. Through all the challenges, doctor’s appointments and therapies, Alex has continued to smile. He is just an extremely happy and content kid. We are constantly amazed by his motivation and determination. Each day is a challenge for all of us. But with the support of our family and friends and most of all our faith, we continue to persevere.
Who else is an integral part of Alex’s daily life?
Alex’s days are filled with numerous therapies, therapeutic horseback riding, and of course school. Alex is homebound through Charlotte Mecklenburg Schools. We have a very supportive extended family and an incredible CNA, Florence, who comes to our rescue in the afternoons each week. And Alex’s best buddy is CAMDEN.
Who is CAMDEN?
In August 2009 Alex was selected as a recipient of a service dog through paws4people. Through this incredible nonprofit organization, we have a very special service dog, CAMDEN. Alex and CAMDEN are nothing but the best of friends and Alex and his dog go everywhere together.
What else does Alex enjoy doing?
He loves to swing, swim, and play just like any other 10 year old. He is just extremely limited in how he does these things. He loves people and loves to learn. Alex just has a happy disposition and loves living life to its fullest.
So How Are You?
The last 10 years, things have not been easy. There have been days when I feel like I can’t even come up for air and days when I am just completely exhausted. In the last two years, I was also diagnosed with Mito and MS. Both of these go hand in hand and in our case are for the most part, genetic. Both are quite manageable in my case, but it definitely woke us up a little bit. My worry has always been that I have to stay strong for my family. It kind of makes it hard at times. But deep down and in some of our darkest days, I am reminded by that sweet boy that we can make it. God picks us up, friends and family come to our rescue and we keep pushing. It’s scary. We don’t know what’s ahead of us. But we have to keep looking ahead and praying for a cure.
When you are able to get a few moments of free time, what do you enjoy doing?
I just get out of the house, even if it is just for Starbucks. My husband and I thrive off our Respite time. Going out of town has never been an easy thing for us to do. I never feel comfortable leaving Alex for long. But we’ll find a hotel or something 15 minutes down the road and just try to be adults for 24 hours. You’d be amazed how refreshed you feel.
I understand you started a special needs program at your church, tell us about it.
Actually, I didn’t start it. It was there, long before we started attending Christ the King Church on York Road. But it is what drew us to this church. And since then I have been trying to help grow it and also lead the program. The program is called Stepping Stones. Originally, it was only a class of older special needs young adults and teens. Now we have also developed a buddy program that pairs up special needs children and teens with certain individuals. This enables these kids to thrive in a regular classroom with peers their own age, so that their parents can attend a church service. It is such an amazing ministry and the volunteers are so dedicated to these kids. My nonverbal child has this awesome group of kids that will grow with him as a Christian. He goes to VBS, sings on the stage, and prays with his peers. And they love him!
What organization does not exist in Charlotte that you wish did?
Sadly, more churches that can accommodate special needs are what we need. There is also a need for more riding programs, more aquatic therapy places, and even more music therapy places. Every type of specialized program like that in the Charlotte area has a huge waiting list. Severely disabled and special needs kids have very limited resources. You would be amazed at how many families do not attend church because the church can’t accommodate their child.
People often want to help but don’t know how to engage or get involved, How can the CSP community help you and your family?
My biggest weakness has always been asking for help. I know if I asked for help a lot of times, things might be a little easier for our family. But every year we participate in what we call the United Mitochondrial Disease Foundation (UMDF) Energy For Life Walkathon. It is to help fund research for Mitochondrial Disease. We walk as Team Alex. The walk takes place at Freedom Park on October 12. We would love it if you joined Team Alex or just gave a small donation to help support us in hopes of finding a cure for this progressive and life threatening disease. Click here to join Team Alex or give a small donation.