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
Omg, Rena and Matt!!! Hugs to you and your sweet family. First, breathe. And let yourself do what you need to to cope with this news. Then know that science and doctors DO NOT KNOW EVERYTHING. When they think they know everything about a disorder.... they find out they were wrong, ALOT. Everyday. So just because this is rare, it is not impossible. Just in the past few years they have found that artificial sweetners raise diabetics blood sugar. Why? Because it's actually bacteria in the intestines that break down sugars.... and artificial sweetners cause the wrong bacteria to multiply and become active, hedging out the bacteria that metabolize sugar. And they thought they had diabetes figured OUT!!! And they still don't know how to determine how a gene will be expressed, especially rare genes. So we will all focus on the brightest end of this spectrum. I am kinda fascinated by genetics and scientific studies, mostly because there does seem to be a chaotic order to all life. Like this study.... scientist realized that atoms under observation become more orderly... even if RECORDED BY MACHINE FOR LATER OBSERVATION!!
ReplyDeletegoing through one opening, then it's clear it didn't go through another. In other words, when under observation, electrons are being "forced" to behave like particles and not like waves. Thus the mere act of observation affects the experimental findings.
To demonstrate this, Weizmann Institute researchers built a tiny device measuring less than one micron in size, which had a barrier with two openings. They then sent a current of electrons towards the barrier. The "observer" in this experiment wasn't human. Institute scientists used for this purpose a tiny but sophisticated electronic detector that can spot passing electrons. The quantum "observer's" capacity to detect electrons could be altered by changing its electrical conductivity, or the strength of the current passing through it.
Apart from "observing," or detecting, the electrons, the detector had no effect on the current. Yet the scientists found that the very presence of the detector-"observer" near one of the openings caused changes in the interference pattern of the electron waves passing through the openings of the barrier. In fact, this effect was dependent on the "amount" of the observation: when the "observer's" capacity to detect electrons increased, in other words, when the level of the observation went up, the interference weakened; in contrast, when its capacity to detect electrons was reduced, in other words, when the observation slackened, the interference increased.
Now how many verses does this apply to?!?! So we will all focus on the brightest outcome!!! It's like God set things in motion when he gave us free will, (the orbit of our galaxy, universe, planet, weather, genetics, love, migration of our ancestors, ect) but also gave us power that we still do not quite understand. When we focus on atoms, they straighten up and fly right?!?! Really... well, that's kind of a super power!! Things are in motion, and we can effect them by being aware and by what we believe we will see. So we will believe exactly what we see. Wesley is an amazing, strong, healthy little boy (who is ADORABLE!) and he will grow in to a fine, powerful young man, and then a wise, happy old man. I imagine him roaring to the world that he is going to live and let live, give and receive love, treasure life and have others treasure his life, and experience all the wonderful, messy, amazing, and touching things that come his way. Wesley is a beautiful boy. I pray God wraps you in an insulating peace and buffers you all for a bit, but most of all I pray that hope and faith fill you all from the tips of your toes to the tops of your heads. ;)
Love from all the Moppins,
De