This was our first vacation. Time off from school and work so we could go to the National MPS Society Family Conference, and extend a few days after to get in some much
needed play time with our kids. For two of our boys, it was their first plane ride, and first hotel stay not associated with a natural history study or clinical trial. Our first time at Disney. We were nervous about the trip, not stressed, but nervous and excited! We had no idea how the boys, mostly concerned about Alex, would do on the plane, dealing with lines at Disney, walking...just a lot of nervousness. All that went actually pretty well. Frontier Airlines was awesome during the peak holiday season, even calling me one of the strongest mothers at the beginning of our trip. Toughest thing was Alex didn't understand why he had to be in his seat with a seat belt on.
We loved the pool at the Yacht Club, and our most favorite park was Epcot.
Jack loves English culture, and his second favorite country is China which you can get a quick glimpse of at Epcot. It was a very crowded, holiday time at Disney but we did our best to navigate and get the kids on as many rides as possible. Jack's coaster hungry sense of adventure was never fully satisfied, and he kept comparing Disney to Cedar Point in Ohio.
All the kids were adorable, and we really did all we could to ensure they enjoyed their time there. Nick kept telling me, "You're my best friend. I love you." That was lovely, and a precious moment.
Alex didn't talk for about 2 days which really scared me. I think he was really overwhelmed with the conference and Disney, and just needed some time to acclimate. Until he started trying to talk again, I was concerned that maybe his hearing might be gone again due to persistent fluid behind his ears, this is just a fact of life with MPS.
We really enjoyed our holiday time together, and then time at home together. It was a special, precious time.
The National MPS Society Family Conference
Truth be told, we've had too much happening raising 3 boys, 2 with Hunter Syndrome (several surgeries in the early years) to attend the National MPS Society Family Conference but we made this year a priority to go. The Society is where you turn when you're first diagnosed, they take family support very seriously, and they do it well, trying to give you the comfort and information you need at that time. They are also with many of our families through the triumphs, the setbacks, and when families face the loss of their child or children. They also are passionate about research and finding treatments and cures.
Baring the full truth, I (Amy) have also been too much of a coward to go. I knew if I went I would see families and children that would leave a wound on my heart, giving me even more to think about than my current burden. We'd also get a dose of hope too. It was time to go and embrace these positive, wonderful people!
What I also loved about the conference is the diversity, all walks of life, all socio-economic, all races, all orientations, all represented here which is unfortunate but awesome all at the same time. Equally humbling was looking into through the lens of how different we all make decisions and choices for our children, I could see in some cases how doctors have to work with many views, and vantage points when working with parents who are advocating for their children. For example, one parent may not have a tolerance for allergic reactions to treatments, where another parent may and push through the period of time that the child may have an allergic reaction and keep treatment going. Some parents might be looking for less pharmacological solutions for their child's disease, and be seeking more homeopathic or alternative, natural remedies. It was just really humbling to see how parents cope and make these really, really big decisions for their children, through a lens that only the parent can understand.
For this conference, I felt that it was important that I listen more than I talk, take in this conference in its entirety and observe which is a definite switch for me. The agenda was well done. I am going to break it up into groupings of messages and information here.
The Encouraging News
MPS II (Hunter Syndrome) Party of 1 or 2?
What was really interesting at the daycare and throughout the conference was that people could not tell that Nick has Hunter Syndrome!! Wow, that is awesome!! His early treatment, his involvement in the IT trial is awesome and the results are evident. So encouraging, the downside is it may not be enough. I still eventually may lose my best friend to this disease. All we can take comfort in right now is that we're doing everything that is available for Nick, and so far the results are great! A sigh of relief for now. I wish the FDA could meet Nick, he speaks volumes for what good medical care, and benefits that approved and trial drugs provide to very sick children.
Also really notable is that Alex's facial features, coarse facial features are common with MPS, are really mild. I had a great conversation in the pool with a Professor of a Nursing Program in Texas about MPS II, Hunter Syndrome. He was really nice, and had inquired about Alex's condition, and just thought he was likely mildly autistic. We had a really nice conversation about nursing, home health services, specialty pharmacies, and Alex's prognosis. He too had no idea Nick had Hunter Syndrome. For Alex though, his challenges from this disease are more than skin deep or the look of his face, you can see the disease in affect to his abilities, you can see it in his hands, and knees, etc. For Alex, he's counting on more breakthroughs. Still though, he's even encouraging as he's in relatively good condition considering this is a deadly disease.
Strong People on the MPS Board, Staff and Researchers Supporting our Diseases
Ready to Work but Funding Is Needed
Beautiful Words and Experiences
And now you're done reading this post, and I hope that you are not crying either. Truth is these kids are worth it, and that should move us all, not to tears but to hope, action, and to soldier on until we win the great battle with this terrible, terrible disease.