Paul is an amazing kid who demonstrates perseverance every day. He has an insatiable curiosity, a fun sense of humor and is a loving big brother to his younger sisters.
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.
December 26, 2020
Merry Christmas and a happy New Year!
We hope and pray that 2021 will bring many changes for the good- especially the slowing down COVID-19 and getting closer to the end of this pandemic.
We mourn those who have lost their lives to COVID-19 and are learning a better appreciation for things we may have taken for granted before. Even though the virus prevented us from holiday gatherings this year, it feels like a small sacrifice compared to some of the really large sacrifices others have had to make because of the coronavirus. We are thankful to live close to family so that even though we meet outdoors and with masks, we at least get to spend time together.
All 5 of us are working from home, as students and/or employees. We are thankful that this was an option made available to all of us. Paul's doctors have recommended that we self-quarantine as a family. Paul has done an amazing job with online school and learning how to make his assistive technology tools compatible with the new learning platform. This experience of diving head first into online learning has really benefited him in the long run.
Paul recently had his multi-disciplinary visit with the MDA clinic. The clinic is not currently scheduling face-to-face visits due to the virus and so all the doctors met with us virtually. Paul needs some scans and tests, but we will wait a bit longer to do those until more people have been vaccinated. In the meantime, his pulmonologist ordered a pulse oximeter and cough assist machine for home use. This equipment is especially important to have in the event that Paul has any kind of respiratory illness. The cough assist machine is also a new addition to his daily stretch routine. Just as the ligaments in his limbs get tight and are developing contractures, the ligaments involved with his breathing muscles also are getting tight. The cough assist machine stretches those to help slow down the tightening. Paul has done an amazing job adjusting to this particular stretch routine, even though I've heard it can feel unpleasant. We are so grateful for your assistance in being able to procure this latest medical equipment. Thank you for your prayerful encouragement and giving spirit.
May 16, 2020
Greetings, friends and family-
The school year is winding down in a much different fashion than anyone could have imagined. We have traded in family gatherings, school performances, award ceremonies, medical appointments and weekend outings for FaceTime, online learning, social distancing and home activities. Being ever mindful of Paul’s weakened immune system and weaker breathing muscles, we have been careful to obey social distancing norms.
This year has been a very different year for us all! At the end of October, an opportunity for me to return to work presented itself, and after much prayer and family discussion, I decided to accept the job. As a result our entire routine changed. Unfortunately, it also means that I fell behind on posting updates here!
Currently we have not been going to regular doctor appointments or therapy visits as we are avoiding medical establishments during the COVID-19 virus. Paul’s next big multidisciplinary clinic visit will be this summer. We had intended to get a PT evaluation for aquatic therapy over spring break so that Paul could receive regular aquatic therapy during the summer months as recommended by the doctor. However, I am not sure he will be able to do aquatic therapy this time around. We hope and pray every day for a return to normalcy. We grieve the loss of so many whose lives ended too soon because of the virus, especially that of a dear extended family member.
Next year, Paul will begin middle school but we do not know yet what the school year will look like. We feel nervous about sending Paul into any crowds. The school district is currently gathering information and feedback from the community in order to make decisions about the next school year. We are taking it one day at a time. During the time of online learning, Paul has learned to work proficiently with assistive technology tools to assist him with writing and other academic tasks. We are excited for the skills he has been able to practice because they will be beneficial when he does return to the classroom. He also has been practicing to “drive” his wheelchair with the battery-powered wheels we were able to purchase thanks to the generosity of our friends and family. This is a makeshift solution to his mobility until we are able to purchase the power wheelchair. Once we commit to the power wheelchair, we will also have to purchase the adapted van in order to transport the chair. Again, thanks to the generosity of friends and family, we have funds in order to do that. Now, it is a matter of timing. We will track how things progress with the virus and carefully consider when interacting with the providers for these things is safe. Paul would need to be assessed by the physical therapist and measured by the assistive technology representative and then we would need to visit dealers of adapted vans.
Sending our well wishes to you for health and peace during this time of uncertainty!
November 30, 2021
I am grateful for the care that Paul is receiving, for his family and friends, and for all who care so much for his well-being - including the HHL Community. Thank you Lord!
December 2, 2020
We all love you Paul!
February 2, 2020
Let God's love live through you; live by spirit, love by faith. Romans 8:9
Paul, you are in our prayers. :)
~The Malpass Family