Don’t Waste Pain

My good friend in Uganda, Paul Collins, has written a really nice story about me and The Everett and Austin Project. You can read his story at:

http:bit.ly/dontwastepain

Paul is an accomplished journalist in Uganda, and I feel very grateful to Paul for his efforts and kind words. I have been so thankful for him to have joined us on our team here at The Everett and Austin Project. Paul Collins lives about 25 km (15 1/2 miles) from Paul Kayonga.

Paul Kayonga is the one whose story inspired the start of The Everett and Austin Project:

Before Paul Collins wrote and published his story about us on his news webpage, Byebyo.com, he asked me to answer 10 questions. Here are the 10 questions and my answers to those questions below…

1. What is Duchenne?

a. Fact sheet PDF – https://www.mda.org/sites/default/files/2019/03/Duchenne_Muscular_Dystrophy_Fact_Sheet.pdf

b. Quoted from https://www.mda.org/disease/duchenne-muscular-dystrophy –

“Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy.

DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases it can affect girls.”

c. Quoted from https://als.ca/wp-content/uploads/2017/02/ALS-MS-MD-English.pdf –

“MUSCULAR DYSTROPHY (MD) Muscular Dystrophy (MD) is the name of a group of about 40 different muscle disorders that are characterized by progressive weakness and wasting of the voluntary muscles that control body movement. As muscle tissue weakens and wastes away, it is replaced by fatty and connective tissue. MDs are not diseases of the central or peripheral nervous system, but exclusively of the muscle. Two-thirds of MD strikes children, although dystrophies such as opthalmoplegic (affects muscles of the eyes and pharynx) and late-onset MD strike in adulthood. MD is inherited or caused through genetic mutation. Although there is no cure for muscular dystrophy as yet, physiotherapy and occupational therapy can help people with muscular dystrophy achieve their maximum level of independence in daily living. In some cases, certain surgical procedures can also improve the quality of life for many individuals with muscular dystrophy.”

2. At what level did you know that you know that your sons had Duchenne and how?

a. Everett and Austin’s mother, Lynne, noticed that Everett was not jumping on the couch as well as the neighbor child who was about the same age. They were both about 3 years old and this was in 1997. He had to hold on to keep from falling. She recognized this and other possible symptoms for the disease because her brother, Perry, had died from the disease in 1982 when he was 15.

b. In the early 1980s, Lynne was told she was not a carrier of Duchenne, but this was before the Duchenne gene was discovered in 1986. If she had been tested after the gene was discovered, she would have been told that she was a carrier.

3. What was your reaction the first time you knew your Kids had the disease?

a. I would say that my initial reaction was shock and fear. Shock that this happened to my children. Fear of the unknown. Dread of what was to come. The boys’ mother, Lynne, tried to fill me in on what to expect, but at the time I had no idea of the reality of how difficult and far-reaching the difficulty would become. I was very dismissive of Lynne’s initial concerns and her experience with the disease. My poor reactions definitely caused a severe disconnect between the 2 of us and she eventually divorced me in 2002.

b. In 2006, I decided to pray every day for a cure for muscular dystrophy and for my boys to be healed. After doing this for about a year, I had a supernatural peace come over me. It was striking and unmistakable. The promise described in Philippians 4:7 came true for me. “…the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” I had this miraculous sense of peace that my boys would be healed someday, maybe not in this lifetime, but someday…and I was OK with that!

c. Underneath this peace – the foundation of it – was the belief in the truths found in 2 Corinthians 5:8 and also in 1 Corinthians 15:51-57.

• • 2 Corinthians 5:8 assures me that when the boys would die and be absent from their bodies, they would be present with the Lord. Their earthly bodies clearly decayed – very quickly compared to most people. And they are now absent from it and present with the Lord.

• • 1 Corinthians 15:51-53 assures me that the boys would be changed, “in the twinkling of an eye.” And that they would “put on” an “imperishable” and “immortal” body.

• • 1 Corinthians 15:54 assures me that their death would be “swallowed up in victory.”

• • 1 Corinthians 15:55 and 1 Corinthians 15:57 assures me that the “sting” of their death would be very minimal when in comparison to the victory that they would have in Christ. And “thanks be to God,” we have victory over death by believing in Jesus Christ.

4. How did you manage to keep up with them after?

a. It was very difficult to ‘keep up.’ I had to draw on my faith very heavily. I believe in Jesus Christ and His forgiveness of sins and gift of Eternal Life to those who receive Him.

b. Believing in Jesus and holding firmly to the promises of the Bible helped me immensely. The instruction in 2 Corinthians 5:16-17 was near and dear to me. In particular, from verse 16: “…from now on we regard no one according to the flesh…,” and from verse 17: “…if anyone is in Christ, he is a new creation…”

5. What are the major problems associated with Duchenne patients?

a. See the answer for question 1, and also…

b. What I noticed in my boys was that they kept losing abilities and from a parent’s perspective it was very difficult to watch and still try to be encouraging to them.

c. The big things they lost the ability to do was walking around age 10 and being able to raise their hands off their lap around age 14. I remember being woken up by Everett’s doorbell that he held in his hand while sleeping about 3:30 AM one night. All he wanted was for me to help him scratch his eyebrow!

d. They needed help getting out of bed around age 10. Around age 11, picking them up under the shoulders was very painful, so we shifted to using a hoyer lift to get them up off the ground where they were playing, or onto the toilet for bowel movements, or out of bed and into their wheelchairs, etc.

From my observation, picking them up under their shoulders caused their shoulders to crush into their spine and lungs because of weak muscles. This was very painful so I ended up switching to the hoyer lift even though I could still lift them up by myself. Lifting them up by myself was quicker and easier, but I switched to the hoyer lift for their comfort’s sake.

e. We had to carry a little plastic urinal everywhere so that they could pee into it and then pour it into a toilet.

f. After age 14, they needed help getting their toothbrush ready, it helped to have an electric toothbrush and to set their arms up so the brush could do it’s work.

g. After age 14 they needed help eating.

6. What helps Duchenne Patients to live long?

a. Nothing really. They don’t live long. Life expectancy was 15 to 20 years when my boys were diagnosed in 1997. Austin died at age 16 in 2012, and Everett died at age 22 in 2017.

b. What helped them live maybe a year or two longer? Prednisone steroid helped them have a bit more strength for a little bit more time. Both boys had complete spinal fusion at age 15. That helped take some pressure off of the lungs so that breathing was just a little bit easier.

c. Everett seemed to respond very well to the spinal fusion and it helped him stay upright. Austin’s heart rate was only functioning at 30% when he had the spinal fusion surgery in the summer of 2011. I don’t think his body ever recovered from the surgery. It may have rejected the surgery. He went downhill very fast and died February 7, 2012.

7. Where did you the idea of starting a charity program?

a. I have been in recovery from addiction since 1995. The first 4 years were pretty intense and strong, the next 6 were pretty weak. Since 2005, the last 14 years have been pretty strong. The principles learned in recovery from addictions have been very instrumental in my peace and well-being. One of the principles is: in order to keep my recovery, I “have to give it away.” Being involved in this charity is helping me give away, or give back, to help those suffering right now in it. To share the comfort that I received with those in need.

b. From out of these principles, I have decided to be grateful for what I have learned from being Everett and Austin’s father. I learned a lot about being a better father. I feel like I have a lot to give to help others going through this dreadful disease, both to suffering children as well as helping parents that are in the shoes that I was in.

c. I feel that I received a lot of comfort and love and care for my boys here in America. When I watched the NTV news report on Paul Kayonga and his 3 remaining boys going through Duchenne in abject poverty, my heart was struck deeply and painfully. I want to help Paul and his kids and others like them.

d. Here is the URL for the NTV News Uganda report on Paul and his boys on YouTube – https://youtu.be/YbMcAMftbzU

8. Why did you focus on Africa First?

a. When I watch the NTV News Uganda story on Paul and his precious children, my heart breaks for them. My heart burns to go and help my brother in the Lord.

b. It’s not fair that they have so little to deal with this disease in poor countries. Here in America, we had great support and care for our boys from the Muscular Dystrophy Association (mdausa.org) and the State of Minnesota. People in Uganda and other developing countries like Uganda are not so lucky.

c. I ended up living in Minnesota for the majority of Everett and Austin’s life. That’s where their mom Lynne is from. Thankfully, Lynne applied for and received Minnesota Care health care for the boys. Minnesota Care ended up paying about $30,000/year for the care for each of our boys! We had to pay a very small deductible for a few years, but then it was completely free.

d. I created “The Everett and Austin Project” to be a source of care for children and parents going through Duchenne Muscular Dystrophy in poor countries. To be like the MDA and the State of Minnesota for those who aren’t so fortunate to receive help from such American institutions.

e. Thanks to NTV News Uganda, I know where to start. Wakiso District in Uganda, near Kampala and Entebbe. 

9. What are your future plans for helping the Duchenne Patients?

a. Go visit children and families suffering from this dreaded disease. Try to show them that they are important and valuable. Break down stereotypes and stigmas and ostracism of children and parents of children born with this genetic defect.

b. Create a far-reaching mechanism for reaching all of the children and families in the world suffering from this disease. The effect of which is to give care and love and supplies to all who are in need.

c. Out into the remotest parts of the world to care for the “lame,” just like Jesus did.

d. Pass out wheelchairs, hoyer lifts, breathing apparatuses and more to help improve quality of life for children and parents suffering from the effects of Duchenne. In America, we got so many handouts of equipment and supplies, PCAs (Personal Care Attendants) and doctor visits – “Muscle Clinics” they were called – for our boys. We had to pay very little for these conveniences to help take care of Everett and Austin. These conveniences should be afforded to children and parents around the world, not just to those in “First World” countries.

10. What kind of support do you need to implement your plans?

a. Lots of prayer. We need an outpouring of blessing from above. We need a miracle to help break down the disparity of wealth between the rich and the poor.

b. We need help setting up The Everett and Austin Project as a registered charity, including both lawyers and funding for what it will cost to carry it all the way through. We need $400 just to get started.

c. We need lots of donations to make all of this possible. Donations of money and equipment, Donations of frequent flyer miles would help a lot also to get volunteers to and from developing countries.

d. We need volunteers to help setup fundraisers. Both people who work the fundraisers and also participants. For example, we had 17 people and 1 dog do the first “Hike for Duchenne,” which was on July 27, 2019.

e. We need volunteers to help serve the foundation’s logistical needs, including grant writing and thanking donors.

f. I am trying to have an open mind as to what all we could accomplish with this foundation. These are just initial ideas and goals.

Update 8/29/19 – 

Since I answered these 10 questions last week, there have been 2 significant points of progress:

1. My good friend, Teina Daley, has volunteered to start researching and commencing grant writing for The Everett and Austin Project. She has had experience doing grant writing in the past!
2. Paul Collins has dug around a little bit and found the exact village that Paul Kayonga is now located in!! The exact location is SSeganga Goberro! Here is a map of the location – https://goo.gl/maps/ct2jwsbLqriSWfWR7.
3. Paul Collins is going to visit Paul Kayonga tomorrow, August 30th!