(Hebrew name meaning Lion of God)
A little over two years ago I posted several blogs about my nephew Micah’s son, Truman, who passed away from SMA Type I or Werdnig Hoffman disease. SMA is a severe genetic disease attacking the nerve and muscle systems. Children born with this disease are known as “floppy” babies. As the nerves quit functioning that control the muscle movement from the spinal cord they lose the ability to move. It eventually affects their breathing and swallowing. We also had two children with the same disease in 1977 and 1982.
Fifteen months ago this cruel disease surfaced in the Heatwole family again. My niece Cheryl has a little girl, Ariel Joy, who is fighting for her life. It is very unusual for it to show up in a family this many times as both parents have to carry the genetic markers for the disease. Just to understand the family connection…Micah and Cheryl are brother and sister and their dad, Richard, is my brother.
Ariel has huge, imploring eyes and an angelic smile. She has never rolled over or taken a step. She can’t turn her head but she can turn her eyes. She is very aware of her surroundings. She loves her family and feels very insecure when others try to touch or hold her.
Here she is celebrating her one-year birthday-December 26, 2013.
Time is running out for Ariel unless God performs a miracle. Her parents, along with family and friends, have diligently and persistently implored God for a miracle to heal their little sweetheart. It truly is amazing she has made it this far. Normally they do not get to celebrate their first birthday.
Ariel is very tiny, weighing a mere eleven pounds. She is a fighter and several times has had a very close call. Her swallowing is now being affected which makes it very difficult to even eat pureed food. I quote from Jeremy and Cheryl’s March 23 facebook page….
“Well friends, it would be impossible for us to make up the kind of hope that we are experiencing right now. Two days ago Ariel choked on a bottle, stopped breathing, became blue and we thought we had lost her. But she came back! The last two weeks or so, she’s been borderline sick and “on the edge” health-wise. The choking event wiped her out and yesterday we truly felt we were looking at the end.… We kissed her last night and put her to bed feeling like we had said “goodbye”. But this morning…. ! She woke up early and took some water. I was just trying to make her comfortable but she liked it and wanted more. Then she wanted breakfast. She polished that off, gave us tiny smiles and was interacting some, looking around with bright eyes…more herself than she has been in days. She has been sleeping, now, all morning. We are so encouraged and are, like I said, hopeful. I have to admit that my soul has been suspicious of such hope. After all, I feel I’ve been looking death in the face. But I have said to my soul, “Bless God! To Him belong escapes from death. Hope in God! Rest and receive hope.” What if we have been walking through the valley of the shadow of death and we’re actually, like He said, walking THROUGH. Please continue praying! (We cannot express how grateful we are!) We are so dependent on His presence, protection and touch.”