Perspectives of The Pompe World

I’d like to start by saying, I am so proud of you.

Getting your sibling’s Pompe Disease diagnosis and living with all it entails was hard for all of us, and the way you navigate it makes me swell with pride. This experience entails a lot of hard feelings and you’ve shown so much resilience and growth. The person you are, and grow to be is inspiring.

I am grateful for your support.

As a parent, I don’t want the weight of responsibility to fall outside of “normal” age-appropriate responsibilities. But I’ve watched you express this innate support to your sibling in your own ways. This support looks different among the varying ages but you love your sibling so much and always offer it when you can. A hand held at an appointment, assistance up the stairs, reminding others of their limitations, or bringing awareness to your peers are all ways we’ve watched you offer support, and they are so lucky to have you. We all are.

You are loved, valued, and cherished no less than your sibling with Pompe Disease.

Your sibling’s diagnosis often requires more time, energy, and attention. Appointments, therapies, treatments, and monitoring, all require a lot from us as a family. Sometimes it may feel hard for you and those feelings are valid. You may feel jealous or left out and those are difficult things to feel but they are normal too. Please know I will always try to bridge that gap any way I can so that you know we love you no less. These are unfortunate circumstances that will always tip the scales regarding attention, but that does not reflect how we feel about you. I hope to do the right things to make this all feel more fair to you when I can.

Don’t ever feel guilty.

If this diagnosis has taught me anything, it’s that this is purely chance. There is no rhyme or reason for why this occurs. No one is more or less deserving to have it or to not have it and feeling guilty about your own health helps no one in the long run. Please always remember this and give yourself some grace as you grow to understand this disease more.

Who you are and will be is important.

This disease will always be a big part of our lives as a family, but it is no bigger than whatever you have going on in your life. We will treat your own trials with the same attentiveness and concern. We will celebrate your own milestones with the same enthusiasm. Things will be different for you but not less. I never want Pompe Disease to overshadow the things you experience, good or bad.

At the end of the day, in my hearts truest desire, I just want you to know that I will try my hardest to make sure you know how much we love you. While our attention and efforts may be dispersed in different ways at different times, that is due to circumstance, and is not a reflection of our love for you or your place in our family. You are vital to our family and vital to the journey which this diagnosis has found us on. We cherish you and your sibling(s) more than I can ever find the words to explain and I’m so proud to have you. You are the best brother, sister, and friend, and that will always make a bad thing better.