To the Parent Whose Child Was Just Diagnosed With MPS II

I know that face. The word mucopolysaccharidosis (MPS) might not have meant nothing to you when the doctor first mentioned it to you. Then you went home to Google it and saw the words “progressive” and “life-limiting.” And everything you knew, everything you hoped for your child, came crashing down. People looking at you going about your daily life might not realize, but if they look closer, they would see something has changed in your eyes. You can no longer focus on what’s right there in front of you because the thoughts racing through your mind are much more real and much more scary. I know, because that was me eight months ago.

I’ve been through many emotions in the last few months: disbelief, dawning realization, depression, anxiety, anger, devastation, guilt… You name it, I’ve been there. The worst times were often the periods just before hearing the next bit of bad news. The times when I could almost convince myself that things would be OK, that it was just a mistake in the testing lab, but I just didn’t know. Then I would get hit with it: yes, he does have MPS; yes, it is MPS II; yes, it’s the most severe version of that.

The simplest of decisions would make me pause. I would stand in the kitchen wondering what to cook for dinner and still be none the wiser half an hour later. Doing the supermarket shopping once, a particular song came on the speakers and instantly I was sobbing in the vegetable aisle. It felt wrong and unreal that life could carry on around me.

You might not believe it, but it has got better. There are more brighter moments now. A meal out. The support from my family. A bit of sunshine. Talking with a good friend. Baileys hot chocolate. Cuddles with my boys. All these things make a difference.

And lately there have been two wonderful things pop up in my newsfeed about medical advances, and though both of these cases were different from our situation, it’s a start. Medical advances can and do make huge leaps. Just think, there used to be no treatment for MPS II. Now my son receives an infusion of an enzyme that halts many of his symptoms, and we have just got on a clinical trial for a version that may also halt the progression in his brain.

Whether a cure comes in time for him is still very much unknown. But when I look at my son, I see a boy who is busy enjoying life with such vitality and commitment. His warmth draws answering smiles from anyone, and he always has loads of hugs to offer.

It may not always be this way, and I know there will be plenty of times I rail against this horrible condition. But for now, I choose to remember the words they told me when I first rang the MPS Society: he is the same little boy he was before diagnosis, and enjoy him for that.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.