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.
October 31, 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!
July 16, 2018
It has been a busy summer but we have felt God’s provision throughout all of the busyness. The sale of our home in San Antonio went smoothly and we have now relocated to Houston. We were able to find a one story home close to David’s new teaching job. It is much more accessible than our last house and will be easier to modify to accommodate Paul’s future needs.
We have started the process of finding new doctors and specialists for Paul in Houston. The medical care possibilities are much greater here and we already feel like Paul is benefitting from that. His certified Duchenne care clinic appointment in Colorado will be next week and we always appreciate the good care they give Paul there. Over this next year we will investigate the medical care in Houston and we may be able to centralize everything here with a neuromuscular clinic.
As with any transition, there has been some stress associated with adjusting. Paul has handled it well. He is still moving around well but we notice he falls more often and his walking takes more effort. We have used his manual wheelchair a lot and having it has enabled us to go out and enjoy activities as a family without worrying about Paul being too tired or about him falling. It also helps us take him around to his medical appointments and he will be able to use it at school to navigate about the building.
Thank you for your continued support and we hope you are enjoying the summer.
Photo Galleries (1)
December 5, 2018
Lots of love to Paul and his family. Wishing for a good 2019.
December 5, 2018
Sending love from Arkansas to Paul and the Mustol Family. We love you guys!
November 8, 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
July 18, 2018
Thank you for posting Paul's journey and updates. Each of you are in our prayers.
Sandy & Lynn McLemore