KIND ……. POLITE ……. THANKFUL ……. TEDDY BEAR ……. MIGUEL .
These are a few of the words that entered my mind after my initial meeting with 28 year old Miguel. We entered his room to find him surrounded by family and staff. He is a rather large young man sitting Indian style in his bed, hooked up to the ventilator that has been breathing for him since he was 23 years old.
He is unable to move any of his extremities. I walk over and take his hand in mine as I introduce myself to him. His voice is soft and gentle as he says, “hello, Shelli my sister Maly told me you were coming.” He smiles a smile so broad and sweet his eyes close slightly.
Miguel suffers from Duchenne muscular dystrophy (DMD).
This is a progressive neuromuscular disorder that begins with muscle weakness associated with muscle wasting of the voluntary muscles. It is quite a debilitating disease that begins around the age of just 4 years old. The muscle weakness generally begins in the upper legs and pelvis leaving these children unable to stand and walk, as it continues to progress to the arms. Eventually they are left paralyzed from the neck down, given an average life expectancy of around the age of 26.
Not only does Miguel have DMD but his older brother just passed away on June 24th at the age of 32 with the same disorder. The two of them had been roommates for the last 5 years here at Harmony House.
They moved from California to Iowa 20 years ago with their mom. Miguel has 2 sisters and 1 brother still in California and his mom has been trying to move herself and the 2 boys back for quite some time.
We were initially contacted to transport just prior to the loss of Miguel’s brother. Finally the time has come. His family in California cannot wait to have them home. I have had the pleasure of speaking with his sister Maly several times and she will be there when we arrive.
His mom kisses him, she will be driving back to California on Monday. As we prepare to leave Harmony House the halls are literally filled with tearful staff hugging Miguel goodbye as we make our out the door. They continue to spill outside asking us to please take good care of their friend telling him how much they love him and will miss him.
Miguel thoroughly enjoyed his flight. He loved looking out at the clouds and asked us to take several pictures including asking us to video our landing during refuel. Unable to move his own arms and legs and dependant totally on us, every single time he asked us to do anything he book-ended each request with a very sincere ‘please’ and ‘thank you’.
Not once did he fail to do so. He kept telling us how happy he was as he smiled that broad sweet smile. I sent Maly a picture as we stopped for refuel telling her we were getting closer.
At last we landed in Burbank to hot sticky 105 degree temperature and conveniently during rush hour traffic. (Which I am convinced that that is probably all day long.)
When we finally arrive at the receiving facility we are greeted by Miguel’s father, brother, sister and 2 nieces and they are all ecstatic. Yes, there is that smile once again. We prayed with Miguel and his family and said our good-byes.
Please keep this family in your prayers specifically that the staff at the new facility will care and love on Miguel as much as they did at the Harmony House .
IS ANYONE AMONG YOU IN TROUBLE? LET THEM PRAY.
IS ANYONE HAPPY?
LET THEM SING SONGS OF PRAISE.
Thank you to Hal, Chris and Mark for sharing this mission with me.
Shelli Engle RN