We have two children, our son being 16, and our daughter being 10. Our son is very “typical.” Our daughter is anything but, as she was born with a regressive, degenerative, and unfortunately non treatable and non curable disease called MPSIIIA/Sanfilippo Syndrome.
Children with MPSIIIA are born very “normal.” They reach all their milestones early on. Problems usually do not being to show until around their 4th-6th birthdays on average, and by this time they begin to present with issues from lysosomal storage accumulation. Our daughter, Karsyn, doesn’t produce an enzyme that we all produce to help us break down, recycle, and replace our old skin cells with new cell growth. When this can’t happen, over time the buildup of byproduct causes damage, eventually taking away one’s ability to speak, walk, maintain continence, chew, swallow, breathe, you name it, it becomes severely effected over time. The best analogy I can give is that this disease is much like ALS and Alzheimer’s combined, only it effects children vs adults. As her doctor explained to us, “it will be like watching your child fade.” Our kids fight an uphill battle, losing everything they worked so hard to acquire in their early childhood, often passing away in their early teens, if not before. This disease is terminal, and critically rare, effecting approximately 1-70,000-100,000 births on average.
That’s the bad news. The good news is, we have for many years now had a new lease on life. I often think of the line from Tim McGraw’s song, “some day I hope you get the chance, to live like you were dying,” and that’s exactly what we’ve done. We look for things to do, places to go, and people to see at any possible turn. Our daughter had never been to an NBA game before this weekend, none of us had! Talk about a bucket list item! Something so simple, yet so profound when you consider the circumstances, so when the opportunity presented itself through A Kid Again, we knew we couldn’t turn it down.
Our daughter, the child who used to be able to run, now cannot stand anymore without maximum assistance, and cannot walk more than 10-15 feet without the same, so we have to take her medical stroller everywhere we go. We were so elated when the Pacers were very quick to say that it was entirely possible to swap the donated tickets through your organization out for handicap accessible seats, but their hospitality didn’t stop there. We were informed of a special disability drop off location, received incredibly close parking, the seats were section 18, main concourse, the ushers made sure we were well cared for, a lady made Karsyn a Pacers colored flower for her chair and we all even received, “our first game” buttons! Karsyn, along with her daddy’s help, was even able to “dance,” for about a minute to “Walk It Out,” when it was played! It’s so great to see her on her feet, even if just for a brief moment!
I want you to know we sincerely appreciate your collaboration with A Kid Again. Thank you also for allowing me this opportunity to paint a picture for you of the child and the family that you’ve forever touched.
You have allowed us the chance to make a very special memory with our child. Memories are very tangible and real. They can be held on to long after somebody is no longer in your physical presence until you meet again. They can also offer the effected individual a break from the everyday norm, something to help them forget, even if for a brief moment in time what they’re dealing with, a moment to feel the true embrace of the city of Indianapolis, as they very anxiously and excitedly accommodated our needs.