Little Levi, 11, Mississippi

“Little Levi” Joseph Krystosek is 11 years old and has his own facepage Little Levi.  Levi was born February 16, 2006 to Joseph and Dona Krystosek in Ocean Springs, MS. He has two sisters, Megan and Maris Rae. The morning after Levi was born at Ocean Springs Hospital he was transferred to USA Children’s Hospital in Mobile, AL. He had apparent birth defects; he was flaccid and his x-rays looked like those belonging to a child with rickets.

He spent nearly two weeks in the NICU. He had the doctors “puzzled.” They were not sure what was wrong. After being told that he may have a disease that had a very high mortality rate, his father and I made the choice to bring him home. Joseph, a respiratory therapist, had researched it and found that if Levi did have hypophosphatasia, there was nothing the medical team could do for him. I’ll never forget the chills I got and still get when his words echo in my ears, “If this is what he has, we are bringing him home. He will die at home with his family. Not in here.” I had never been more moved and proud of my husband when he went to tell the doctors in the NICU that we were taking him home. It would take 2 weeks to confirm that Levi did not have that horrible disease.

Levi started to do better once we got him home. We were feeding him with special feeders, haberman feeders, every two hours. He ate every two hours until he was a little over 2 years old. I often joke that for his first birthday he got two things, a diagnosis and a new head. On February 27, 2007 he had the top of his totally reconstructed because 3 sets of sutures in his head had fused to soon.

Levi has been diagnosed with: Jansen’s Metaphyseal Chondrodysplasia, Chronic Kidney Disease Stage 1, hypocalcaemia, Optic Nerve Atrophy and has had both of his eardrums reconstructed along with his adenoids removed. His latest surgery on October 8, 2013 was the realignment of both of his ankles.

     "Because his disease is so rare, one of 30 cases ever documented worldwide, we have to travel to see the specialist to get the best possible outcome of this degenerative and debilitating disease".

Levi is mentally fine. All smiles and quite the character most of the time. You can check out some of his you tubes on channel Littlelevi1606. The main thing that we ask for are thoughts and prayers, but if you would like to send Levi a card, letter, happy or donation, his address is:

“Little Levi” Krystosek
P.O. Box 323
Ocean Springs, MS 39564

                                      ~ Dona (Levi’s Ma)