Ramblings on Muscular Dystrophy, because I need to

In the past few days, Dick and I have visited a number of young men with Muscular Dystrophy, checking on and repairing their power chairs. As I list them in my head, I am dumb-struck by the number of guys we know and love with this disease:

Ronnie

Fulvio

I remember those we have lost to this disease, such as Ronnie and Fulvio.

Dick with two of Ronnie's younger brothers

We still closely watch the two younger brothers in Ronnie's family for signs they may be developing MD. Fulvio was the fourth son his mother had lost to this disease.

Stephen (left) and Sebastian (right) are two brothers we have known in Santiago, Atitlan who have MD.  Sebastian recently died from this disease.

Dick recently put Sebastian, their nephew, in his first power chair.  This little guy's disease is progressing extremely quickly.

Daniel (above) and his brother Christian live in Jocotenango, just outside of Antigua.  Their dad has been out of work for over a year after losing his job managing the local Pollo Campero restaurant.

Luis (in the blue shirt), who has MD, with his brother Francisco, who does not.  Francisco did not inherit the gene for this disease.

Wilmer and Miguel live in San Francisco el Alto, in Totonicapan.  Each time we visit, their dad asks us what he can do to make his sons better.  It breaks my heart each time I must tell him there is nothing he can do but love them well for as long as he has them.

We also recently gave a second power chair to Francisco who lives outside of Antigua.  His older brother Javier has had one for a while and they had been sharing it as Francisco has gotten weaker.

Finally, here are the two brothers we visited just yesterday in Texcuaco, along with their cousin, Yelsin.

If you notice, these are often brothers or cousins or nephews. This is because MD is a genetically related disease, striking 50% of the boys who are born to mothers who carry the MD trait. Nephews and cousins often have the disease, too, since 50% of the girls born in these families will pass on the disease to their sons as well.

Can I just say how much I am coming to hate this disease? It is, in my mind, as deadly as childhood cancer in this country.

Praying with Fulvio's mother during one of our
visits to his home.

It is the hardest for me to face when I see multiple siblings in the same family have this disease, and know the future facing them and their parents. Imagine, as a parent, watching your "normal" son suddenly begin to stumble and fall for no apparent reason. Then they can no longer support their weight, and lose the ability to lift their hands high enough to feed themselves. Later, they will no longer have enough muscular strength to even breathe properly, and this will eventually lead to their death. To watch this repeatedly in more than one son is beyond my comprehension.

Please pray for these young men and their parents. Most of these young men we know have a relationship with Jesus, as do their families. That does not make it easier, however, to watch their decline.


Sometimes, for me, it makes it harder, knowing that our all-powerful God could heal them in an instant if He chose to. This leads me to the conclusion that their disability has a divine purpose. As when they Jews asked Jesus why the man was born blind, He replied, "So that the glory of God can be revealed," I have to believe that God allows these boys to struggle with this sickness to somehow bring Him glory. How I would love to see His glory revealed in miraculous healings, as with the blind man who approached Jesus.

That does not often happen though. Some might accuse us of not having enough faith to bring about theses healings. I don't believe God's ability to heal is limited by our faith, however weak or strong it is. I often bring these young men before Him, as the friends lowered the paralytic through the roof to get to Jesus. But nothing outwardly happens. They do no get up and walk back into health.

Does that mean God does nothing? On the contrary, I believe He heals them spiritually, giving them to ability to face their deaths with faith. They bring Him glory in the way they live each day until they are reunited with Him. They bring Him glory by the very evident confidence they and their parents have that this life is not all there is and that death is not an ending but a transformation.

So what are we to do? First and foremost, we remind them of the Jesus who loves them, whatever their condition. We challenge them to live with purpose and to pray that God will use them, just as they are. (This is where power chairs, computers, and education come in.) As they become weaker, it becomes more difficult as our challenge becomes that of helping them see the glory and wholeness that awaits them when they see Jesus face-to-face.