We have heard a couple things in the past few days. We have heard from some wondering what they should tell their kids about Maddie and Pompe disease and from others that some misinformation may be circulating.
Regarding the first, I'll summarize what we have learned from the speacialists and what we are communicating in our house. Maddie has a rare, genetic, progressive neuromuscular disease named "late onset" Pompe. She will start treatment in the coming months and remains a normal, healthy girl. Since we have caught this early and medicine is available, the long term prognosis is good. The treatments will prevent future muscle damage and medical advancements will bring therapies in the coming years.
In response to the misinformation, Maddie will grow old and grey just like you and me. Before the creation of the medicine, children with Infantile Pompe faced a dire situation while the adult onset patients were faced with years of challenge. Today, out of the ten patients treated locally, some are over 60 years old.
We are not surprised there is confusion because of the commercials for the "Extraordinary Measures" movie and what you may find with a Google search. There is no doubt the road ahead will be filled with struggles and tears. However, it will also be filled with small victories, laughs, and medical advancements.
In the end, please be considerate of the information communicated about Maddie and if you hear misinformation, please correct it. It is best for your kids and for ours. Thanks.