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. They also experience weakening in the arms and all other skeletal muscles.The weakening of the muscles involves the heart muscle and the muscles involved with breathing. People with DMD may live into their twenties and thirties. There is no cure for DMD.
February 20, 2018
After a bout with the flu (despite the vaccine) and strep throat, Paul is doing well. We are thankful that he did not experience any complications and is completely recovered.
We are also thankful that we have been able to move forward in several areas of Paul’s care. The sores on his heels have healed and his new leg braces will be ready next week. In addition, his wheelchair order is being processed and we are hoping it will arrive by the end of this month. This is a process we began last summer and we have learned a lot along the way, namely that these things take a long time! Unfortunately the insurance denied our request for a power wheelchair, which is essential, because Paul has weakened muscles all over his body, not just in his legs. For now we are settling for the manual wheelchair while he borrows a powerchair at school. Soon we will appeal the denial for the powerchair. We are trying not to use all of the funds people have so generously donated on one single purchase because there are so many ongoing expenses and some home and vehicle modifications close on the horizon.
Most notable of all the things that have occurred over the last several weeks was the occasion of Paul’s 9th birthday! We all celebrated as a family with a special dinner at his favorite restaurant and a Yoshi cake. (Yoshi is a character from Super Mario Brothers and a stuffed version of him is a frequent companion to Paul). HAPPY BIRTHDAY, PAUL!
December 26, 2017
Merry Christmas and a Happy new year!
We are enjoying a break from the busyness of work and school days. David has time off from teaching, as does Anna, who has been working part time as a substitute teacher. With the kids out of school too, that means everyone can be together for the days of celebration and hopefully also some rest!
The wheelchair is still going through the approval process. We are hopeful it will be completed soon! We have also begun an appeals process with insurance to get Paul’s daily steroid approved. One side effect of such a large dose of steroids is developing cataracts. At the last eye appointment, the doctor saw a small spot on one of Paul’s eyes. He says it may not be connected to cataracts, but we will return to the eye doctor soon to make sure there has not been any growth of the spot. Also, he will be visiting the orthotics clinic soon to make adjustments to his leg braces. Paul still wears them every night to stretch his legs. Recently he has had to stop wearing them though because he has grown and they are causing sores where they are fitting too tightly.
In other news- we will be trying to move to another house soon, one that is more accessible or at least easier to modify for Paul’s needs. David and Anna carry Paul up and down the stairs now which is proving to be a challenge now that Paul is getting older. He will be 9 in a couple months! Our current house would not be very navigable with a wheelchair because it also has narrow doorways and passages. The kids are excited about the move at times and at other times feel apprehensive about it.
Paul is very happy about the Christmas break. As in other years, he has only one simple gift request for a toy. It seems that his favorite part of Christmas is to be with family and to relax away from school responsibilities.
Thank you for your continued support and best wishes to you for a wonderful holiday season!
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March 20, 2018
Thank you for posting Paul's journey and updates. Each of you are in our prayers.
Sandy & Lynn McLemore
November 28, 2017
Paul is so full of life and joy. Lots of love and prayers are flowing his way!
September 2, 2017
Thinking of all of you... Happy start for school year for Paul and his sisters.
Sandy & Lynn
June 3, 2017
Thanks for posting the information about the family, school, and treatment. Prayers for all of you continue.
Lynn & Sandy M.