I am creating this account to help my daughter and son-in-law with costs that aren’t covered by insurance. This would include things like the cost of travel to and from St. Louis, copayments from doctor’s visits, lab draws, infusion center usage, orthotic inserts, therapy, etc. Although Courtney is able to take off from work to take Krew to treatments, they are days without pay.
As many of you already know, Krew was diagnosed at his newborn screening with Gaucher disease Type 1. This came as such a shock to the whole family as no one has ever even heard of such disease. Gaucher Disease is very uncommon. It is a genetic disorder where fat-laden Gaucher cells build up in areas like the spleen, liver and bone marrow. Type 1 is the most common and is treatable, but not curable. If left untreated, however, it can be deadly as fat cells will build up in major organs, causing them to stop functioning and build up in bone to cause pain.
During the first year of Krew’s life, he had multiple doctor’s visits to have labs drawn to check his blood levels and check on internal organs for enlargement to give the doctor’s a better understanding of when to start treatment. During this first year, we all noticed that Krew was falling behind developmentally. He wasn’t reaching his milestones as most babies were. Their pediatrician recommended Early Intervention Physical Therapy. Due to COVID, therapy wasn’t able to come in the home, however, they did telemed visits frequently. The therapists not only agreed on his developmental delay, but was concerned with the fact that Krew had muscle stiffness on just the right side of his body (right arm and right leg).
He was then referred to St. Louis Barnes Jewish Neurology department where they ordered an MRI on his brain. The MRI showed less white matter on his left side of the brain than the right. Since then, Krew has had two sets of lab panels done – a CMA, which is Chromosomal Microarray Analysis, and a Leukodystrophy panel. These tests look for extra or missing chromosomal segments which will give the doctor’s a better understanding of why Krew is having the issues he does and provide us with a diagnosis. Both of these tests came back with no findings, which is good and bad. Good because this could mean Krew does not have any underlying conditions, but bad because they do not test for everything. They are in the process of getting insurance approval for additional testing, but as always, this is a battle.
The Neurology department had also decided to have Krew fitted for orthotic inserts and a night time brace to help with his feet wanting to turn inward and stretch out his right leg muscles. He has a set that he wears during the day and one that he wears at night on his right foot/leg. More than likely, he will have to have orthotic inserts for quite some time to help with him being able to walk and stand, which will require multiple fittings and sets which will get costly over time.
Krew will also undergo IV infusions twice a month for the rest of his life for the treatment of Gaucher disease. He recently started his infusions in June of this year. For the first year, he will have to receive these treatments at St. Louis Barnes Jewish Hospital. After a year, his provider will determine if he is able to receive treatments at home; insurance is also a determining factor in this as well – whether or not they will pay.
Krew has also been doing Physical Therapy, Occupational Therapy, and Developmental Therapy since March of this year and continues to do so. Up until the beginning of September, these were all done via Telemed. The therapists would give Courtney and I exercises and tasks to work with Krew on. This was done one to two times a week for each service. Beginning September 1, the Physical Therapist has been coming to my daughter's house twice a week and spending an hour with Krew. The Occupational Therapist continues to do Telemed once a week with Krew. Developmental Therapy has been put on hold due to COVID restrictions and only being able to provide a max of two services at a time.
God has worked in mysterious ways in their little family. None of us had ever even heard of such disease that Krew has and this has all been a scary and stressful journey. This new "norm" that we all are adjusting too We are so thankful for the medical team that we have and the medications that are available to help Krew from becoming worse. Courtney and Tim have appreciated each and every person that have reached out and have prayed for Krew and their family. We are truly blessed and thank God each day for his blessings!
The most recent infusion trip. So thankful that there are treatment options to help his disease from getting worse! <3
Krew with his big brothers - Hudson (7) and Landon (13)!
As many of you already know, Krew was diagnosed at his newborn screening with Gaucher disease Type 1. This came as such a shock to the whole family as no one has ever even heard of such disease. Gaucher Disease is very uncommon. It is a genetic disorder where fat-laden Gaucher cells build up in areas like the spleen, liver and bone marrow. Type 1 is the most common and is treatable, but not curable. If left untreated, however, it can be deadly as fat cells will build up in major organs, causing them to stop functioning and build up in bone to cause pain.
During the first year of Krew’s life, he had multiple doctor’s visits to have labs drawn to check his blood levels and check on internal organs for enlargement to give the doctor’s a better understanding of when to start treatment. During this first year, we all noticed that Krew was falling behind developmentally. He wasn’t reaching his milestones as most babies were. Their pediatrician recommended Early Intervention Physical Therapy. Due to COVID, therapy wasn’t able to come in the home, however, they did telemed visits frequently. The therapists not only agreed on his developmental delay, but was concerned with the fact that Krew had muscle stiffness on just the right side of his body (right arm and right leg).
He was then referred to St. Louis Barnes Jewish Neurology department where they ordered an MRI on his brain. The MRI showed less white matter on his left side of the brain than the right. Since then, Krew has had two sets of lab panels done – a CMA, which is Chromosomal Microarray Analysis, and a Leukodystrophy panel. These tests look for extra or missing chromosomal segments which will give the doctor’s a better understanding of why Krew is having the issues he does and provide us with a diagnosis. Both of these tests came back with no findings, which is good and bad. Good because this could mean Krew does not have any underlying conditions, but bad because they do not test for everything. They are in the process of getting insurance approval for additional testing, but as always, this is a battle.
The Neurology department had also decided to have Krew fitted for orthotic inserts and a night time brace to help with his feet wanting to turn inward and stretch out his right leg muscles. He has a set that he wears during the day and one that he wears at night on his right foot/leg. More than likely, he will have to have orthotic inserts for quite some time to help with him being able to walk and stand, which will require multiple fittings and sets which will get costly over time.
Krew will also undergo IV infusions twice a month for the rest of his life for the treatment of Gaucher disease. He recently started his infusions in June of this year. For the first year, he will have to receive these treatments at St. Louis Barnes Jewish Hospital. After a year, his provider will determine if he is able to receive treatments at home; insurance is also a determining factor in this as well – whether or not they will pay.
Krew has also been doing Physical Therapy, Occupational Therapy, and Developmental Therapy since March of this year and continues to do so. Up until the beginning of September, these were all done via Telemed. The therapists would give Courtney and I exercises and tasks to work with Krew on. This was done one to two times a week for each service. Beginning September 1, the Physical Therapist has been coming to my daughter's house twice a week and spending an hour with Krew. The Occupational Therapist continues to do Telemed once a week with Krew. Developmental Therapy has been put on hold due to COVID restrictions and only being able to provide a max of two services at a time.
God has worked in mysterious ways in their little family. None of us had ever even heard of such disease that Krew has and this has all been a scary and stressful journey. This new "norm" that we all are adjusting too We are so thankful for the medical team that we have and the medications that are available to help Krew from becoming worse. Courtney and Tim have appreciated each and every person that have reached out and have prayed for Krew and their family. We are truly blessed and thank God each day for his blessings!
The most recent infusion trip. So thankful that there are treatment options to help his disease from getting worse! <3
Krew with his big brothers - Hudson (7) and Landon (13)!Organizer and beneficiary
Julie Metten
Organizer
Eldorado, IL
Courtney Drone
Beneficiary