Reflections on MPS Awareness Day

Posted Sunday May 15, 2011 by Melissa

I wear purple for my son

As most of you are well aware, today was International MPS Awareness Day. When reminding our friends on Facebook, I noted special thanks to those that have made our life with MPS even better than it was before MPS. That thought got me to reflect however. Was I just happier or more thankful now because Case is doing relatively better since becoming involved in the clinical trial? Or did I truly believe that MPS had changed our lives for the better? Although I was pretty sure my answer was the latter, it caused me to seriously reflect upon the past 2 years and to go back and read some of Case’s CaringBridge entries to see “from whence we’ve come.”

The interesting part is that it still feels like it was yesterday. And of course, it feels like it was light years ago. Although I am bursting with gratitude and joy about Case’s improvements, I am heartbroken about the children our community has lost this year alone. Such is the life of MPS – the highs and the lows. And that is probably the greatest lesson I’ve learned in all of this – God’s faithfulness and constantcy through it all. The highs cannot define me, for they do not save my soul. The lows cannot define me because God is strong enough to carry me even then.

Revisiting our emotions from 2 years ago is bittersweet. Here is our first CaringBridge entry:

Wednesday, April 22, 2009 1:11 PM, CDT

We are still awaiting the results of the blood tests which will confirm a specific diagnosis for Case. It will probably be another 3 weeks or so before we know. In the meantime, we have been blessed by a number of miracles or other blessings:

~ Mom is a nurse and God led her to watch a show about Hunter Syndrome and tell us about the condition

~ We went on vacation with mom to Gatlinburg and she really got to see all his symptoms first-hand for a long period of time

~ We had planned for the big boys to be at my dad’s and Case home with me, which ended up being the week we had to start dealing with this

~ Before the doctor’s appointment, I had time to observe Case and notice his joint issues

~ There was a cancellation at the genetics clinic for them to get us in the next day instead of the appointment 5 weeks away that they had

~ Someone realized we were a possible MPS diagnosis and called to get us into the genetics clinic right away

~ Someone else sent my questions to their neonatologist who e-mailed the geneticist to get us in sooner (a friend called these last 3 where God sends the lifeboat, the helicopter, and the airplane – good one)

~ Case is young enough to treat the condition more effectively

~ Case said “I love you” the other morning after the night before I was telling Chris I wanted him to respond and know that I love him

~ After praying for a cure, we discover that last week, they announced a clinical trial for ERT into the spinal cord for Hunter Syndrome, to hopefully address the neurological decline

~ This December is the MPS Society conference, which only happens every 5 years, and we will be able to meet many other MPS families and the leading researchers in this area [thankfully, we later learned that the conference happens every year; only the Disney conference is every 5 years]

~ Becky just started a class on special education and the laws and other things affecting them and will be forwarding information to me

Amazing things happening! We can already see God working all around us. This will involve many changes and challenges for Case and the rest of our family so we appreciate your continued prayers.

“And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.” James 5:15-16

————

Thank you to the powerful prayer warriors in our lives. Thank you to our friends that support us. Thank you to all of you who give generously of your time, finances, meals, and hearts. Thank you to our MPS family who welcomed us from day one. To me, MPS Awareness Day is also to make others aware of the incredible support all of you have given us.

You may also like:

Leave a Reply