Wesley's Care Coordinator called and confirmed what type of MPS Wesley has.
He has MPS Type 2, also called Hunter Syndrome.
Here is a link better describing what Hunter Syndrome is: http://www.mayoclinic.org/diseases-conditions/hunter-syndrome/basics/definition/con-20026538
He has MPS Type 2, also called Hunter Syndrome.
Here is a link better describing what Hunter Syndrome is: http://www.mayoclinic.org/diseases-conditions/hunter-syndrome/basics/definition/con-20026538
MPS is an "orphan disease" meaning it is so rare that major pharmaceutical companies don't work on more affordable treatment plans because it effects so little of the population. Hunter Syndrome specifically effects less than 200,000 people in the US.
As of right now we have a care plan meeting at the Children's Hospital on Wednesday with the geneticist and Wesley's Care Coordinator. We will have an depth meeting about the disease; what causes it, what it's effects are, and of course, treatment options.
As of right now we have a care plan meeting at the Children's Hospital on Wednesday with the geneticist and Wesley's Care Coordinator. We will have an depth meeting about the disease; what causes it, what it's effects are, and of course, treatment options.
I tried to prepare myself. I really really tried to prepare myself as we were already told it was MPS. We just had to have it narrowed down to what type. I thought it would soften the blow. Or I at least hoped it would soften the blow. When she said what type. When she said what treatment type. When she said that the treatment costs hundreds of thousands of dollars, 200,000.00+ dollars A YEAR...
I felt like I couldn't breathe. She said someone from the company that makes the enzyme would be contacting me and discussing how much insurance would cover and what the other options are for paying for his treatment that he will need weekly, biweekly, or monthly for the rest of his life.
I'm still processing. This is so, so much to process. This is a lot to take in. I am so thankful to have my husband and our families and our friends by our side. Please pray for us as parents, our journey, and of course my sweet boy Wesley. In the coming days, please pray for our doctors and our care plan meeting. Also pray for safe travels as it is a 4 hour drive for us to the children's hospital.
Thank you Wesley's Warriors. I appreciate you all so much.
I felt like I couldn't breathe. She said someone from the company that makes the enzyme would be contacting me and discussing how much insurance would cover and what the other options are for paying for his treatment that he will need weekly, biweekly, or monthly for the rest of his life.
I'm still processing. This is so, so much to process. This is a lot to take in. I am so thankful to have my husband and our families and our friends by our side. Please pray for us as parents, our journey, and of course my sweet boy Wesley. In the coming days, please pray for our doctors and our care plan meeting. Also pray for safe travels as it is a 4 hour drive for us to the children's hospital.
Thank you Wesley's Warriors. I appreciate you all so much.
With Love,
Rena
