The Journey of Super Ryder with Multiple Rare Diseases
December 8, 2014
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.
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