Our little warrior Ryder came into this world fighting from the beginning arriving early at 35 weeks. After respiratory distress, jaundice, and a battle with MRSA sepsis we were happy to have our 3rd baby home. Throughout his first year we battled prematurtity issues that involved PT/OT, torticollis/plagiocephaly that meant he had to wear a molding helmet, and right on the cusp of his first year we discovered he had Neutropenia! What is Neutropenia? Neutropenia is a very rare blood condition that causes a reduced number or complete lack of neutrophils. Neutrophils are a type of blood cell that defends the body against infections. without those neutrophils he was immune compromised.
We were referred to the University of Iowa to see a hematologist who could keep an eye on his levels. We had bone marrow biopsy performed to rule out cancer and after 3 hospital stays it was decided he would need to start Neupogen injections. They are a marrow stimulating shot to help boost his neutrophils hoping to protect him against infections and keep him out of the hospital a little more. We must make many trips to see his specialist, and any time he runs a fever we have to go to our local ER for labwork. As of July 2014 thanks to some x-rays it was discovered Ryder has some skeletal dysplasia it looks like we might be dealing with another genetic disorder altogether. Shwachman-Diamond syndrome. He had to undergo a 4 day hospital stay for a EEG after he started experiencing seizure like activity but again no real answers. Then October 21st sent us in a completely different direction.. Ryder’s genetic screen came back POSITIVE for a mitochondrial disease called complex 1 deficiency.
It’s been daunting and draining witnessing everything he has to go through battling this. We will be making plans to reach out to a specialist for help and he will have to have a MRI to see if he already has some cerebellum damage. Despite it all he is such a fighter and comes out smiling no matter what he faces… that is a true super hero.