Parents of this 5-year-old boy with Primordial Dwarfism were told that he will not live past 9 months. Defying what the doctors said, the boy is living his life with his parents and is taking his first steps.
This 5-year-old boy with a rare form of dwarfism has defied doctors' predictions that he would never walk.
Jonathan Kremer, from Hadamar, Germany, is one of only 200 people worldwide with Microcephalic Osteodysplastic Primordial Dwarfism Type 1 (MOPD1).
Tiny Jonathan stands at only 80cm (31.5 inches) tall and has the prominent eyes and nose characteristic of the condition. Doctors told his parents that he would never learn to crawl or walk or even reach his first birthday. But after connecting with specialists on MOPD1 from learning more about the condition, his parents were able to give him the care he needed.
His mother Simone is now the founder of the 'Walking with Giants Germany', an organization bringing together the families of those suffering from primordial dwarfism in Germany - and Jonathan is a happy little boy playing on his stroller and riding horses as part of his riding therapy.
While talking about his condition, his parents detailed,
“Jonathan's type of primordial to our wisdom is extremely rare. We were told Jonathan would not live more than nine months and now he's five years old. We were told he could never walk and he still his first step.”
When asked to talk about how they take care of their son. They said,
“We have a daily routine and we have to stick on this one due to the fact that he's getting so many medicines starting very early in the morning. Like Jonathan has to get his medicine on a specific timing. So, we also need to start early in the morning with the breakfast. Jonathan eats only meshes so he's not able to eat real meat or larger items and he eats five times a day. And then before he's going to bed, he's getting as well as milk. Jonathan needs medicine 19 times per day. And these are the different types of medicine.”
Jonathan is a tiny boy who is only 80 centimeters tall and weighs less than 7 kilos. In addition to this, He also has facial abnormalities so he has prominent eyes and a prominent nose. The hair on his body are also very light.
His mother said,
“During pregnancy, the doctors saw that Jonathan isn't growing like a healthy child but never knew why. I was frightened because he was so small, he only had 29 centimeters as he was born and he was only 490 grams a couple of weeks after he was born. Doctors told us that Jonathan has multiple malformations of his brain and they told us that he never could learn to crawl, to walk, to talk, to eat from a spoon or he not will celebrate his first birthday.”
Currently, Simon and Jonathan are in contact with many doctors and researchers who are trying to understand his condition in a better way to come up with a better prognosis. Here’s to hoping Jonathan has a long healthy life.
Article Source: Truly