Paul was born in 2009 to his proud parents, David and Anna. He is a loving big brother to two younger sisters. With his dimpled smile and bright blue eyes, he exudes happiness. He is a clever child with a big imagination and an insatiable curiosity.
In 2015, Paul’s family received the devastating news that he has Duchenne muscular dystrophy. DMD is a fatal genetic disorder that results in a progressive loss of muscle strength. Most boys with DMD lose the ability to walk by age 10-14. In addition to losing the use of the legs, the muscles in the arms and other skeletal muscles are also impacted. The weakening also occurs in the heart muscle and the muscles involved with breathing. Currently, there is no cure for DMD.
July 25, 2019
It’s hard to believe that it’s been a year now since we moved to the Houston area. We feel quite at home in our new community and are grateful for all the support and services we have here.
Paul has had many medical appointments this summer, but thankfully has still had frequent opportunities to visit the pool as well as go on other fun outings. The pool is a great place for Paul because of how freely he can move in the water without feeling like his muscles are weighing him down. The under water exercise is also good for his breathing muscles.
His multidisciplinary clinic visit was last week and we are continuing with the daily steroid treatment. The doctors are pleased with how he has maintained his ability to get around. His breathing test showed some weakening in his breathing muscles which will mean he needs to see the pulmonologist more frequently than before. This is not unexpected. Usually age 10 is the time when a child with DMD needs to have more frequent tests and checkups especially with the cardiologist and pulmonologist. Paul will be getting new orthotic braces for his legs for nighttime stretching (to prevent contractures). He can walk but uses a manual wheelchair out in the community, for example at parks, malls, museums, or between classes at school, to minimize falls and exertion. He cannot self-propel the manual wheelchair so we hope to purchase power assistance devices for his chair. These include a joystick for his manual wheelchair and battery powered wheels (which would be interchangeable with his regular wheels). It is an “in-between” solution before getting a power wheelchair so that we can continue to easily transport and stow his current chair yet give Paul more independence by allowing him to “drive” his own chair. Unfortunately the power assistance devices most likely will not be covered by insurance. The insurance company has difficulty understanding the progressive nature of his disorder and that all his muscles are impacted (not just his legs) and that the more he uses his muscles, the more they can become damaged.
We feel extremely grateful for the generosity people have shown to us and to Paul. I can’t tell you how many times we go to the mailbox and pull out a medical bill that makes our jaws drop to the ground. Then our second reaction is one of relief that we are not in this alone.
October 23, 2018
We just recently completed the first nine weeks of the school year and all of our children have adjusted well to their new school. We are especially pleased to see the compassion that is shown to Paul by his numerous teachers and by his peers. Paul has had a couple minor injuries and some leg cramps, but nothing serious. He enjoys going out to recess this year but he is still trying to learn how to pace himself and recognize when he needs to take a break. He is certainly exhausted by the end of the day! He continues to have an avid interest in all things Minecraft and Super Mario Brothers and he enjoys activities involving coding, robotics, science and engineering.
We will have our first visit to the neuromuscular clinic at Texas Children’s Hospital in January 2019, where in addition to seeing a neurologist and a PM&R (physical medicine and rehabilitation) doctor, he will also see a cardiologist, pulmonologist and other specialists. He will be turning 10 in February which means they will need to start monitoring his heart and lungs more closely (once a year rather than every 2 years). While we still greatly appreciate the care at the Duchenne certified clinic at the Children’s Hospital Colorado, we cannot ignore the fact that traveling there takes us away from our other children and creates stressful traveling situations. We will see how the January appointment goes and take it from there.
As always, we feel humbled and honored that you have taken such an interest in helping Paul and the rest of our family. We are truly thankful!
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July 15, 2019
I’m so proud of you for your faith and strength. Praying for your family. Galatians 6:2. Psalm 127:3 Children are a gift from the Lord; they are a reward from him.
November 27, 2018
Lots of love to Paul and his family. Wishing for a good 2019.
November 27, 2018
Sending love from Arkansas to Paul and the Mustol Family. We love you guys!
November 7, 2018
Hello to Everyone, We enjoy keeping up with all the Mustol's on this website. Thank you for sharing the family pictures. I was able to visit in Houston and Joyce was so wonderful to share her home with me so we could visit. :) :) Thanksgiving is on its way for lots of fall adventures for all of our families. Happy early Turkey Day! Your friends, Sandy & Lynn- tell the kiddo's that we have a very spoiled 17 lb. cat. :) :) named Daisy...her best joy is sleeping most of the day.
Sandy & Lynn McLemore