Little Levi is Beating the Odds
Author
Thomas Wiest
CEO, Aspirience Home Care
I was talking with someone associated with the Muscular Dystrophy Association the other day and she was telling me about little Levi and how he is doing so well with his neuromuscular disease. I just had to share her story and what half-day home care has done for this little patient and his family.
Levi wasn’t suppose to walk, or eat without his feeding tube or live past his first birthday. All of which have happened, and with grace.
Levi turned 4 years old this past Saturday and is outliving and outpacing most expectations from doctors, nurses and even his own family.
He started out life in the Neuro-Intensive Care unit after he was born in Minot, ND. They were not aware that he was going to be born this way.
No one is supposed to be born this way.
No one really knew why he was not normal either. Doctors and specialists conducted tests for a year and a half. Something wasn’t right with him and all the family knew was that their little boy was fighting against an invisible illness.
They brought him home and had half-day, personal care assistant, home care, 12 hours a day, 7 days a week. It’s been like that for the past 4 years now.
After being sent to Rochester, Minnesota little Levi was diagnosed with a mitochrondial defect. But under that heading comes 50 other diseases that doctors were not able to pin-point.
Then after a second muscle biopsy another diagnosis of congenetal myopathy. Another condition with 50 or so diseases underneath its umbrella. It was not looking good as both diseases have no cure.
So that’s where he is. We have congenetal myopathy and a mitochrondial defect and they are both unclassified and the family has no idea which ones they are. But little Levi just keeps on improving and improving.
Now at age four with so much he wasn’t supposed to do, he’s doing so much. He has learned sign language to communicate, wheels himself around the house in his custom sized wheelchair and he plays baseball.
Levi may only be about the size of a one year old, he may only have the cognitive abilities of a two year old but he is not about to slow down.
His progress has been aided by the Muscular Dystrophy Association and a solid PCA home care provider, helping the family with resources and special needs.
It’s good to know, Aspirience Home Care can help you with home care like little Levi.