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.
Sincerely,
Matt Crowley
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.
Sincerely,
Matt Crowley
Matt and Donna, thanks so much for giving us all the details and the insight! It sounds as though you are in wonderful hands, including the big guy! Thoughts and prayers coming your way!
ReplyDeleteYou've confirmed what I thought from what I've heard, but it sure is nice to see in black and white that Maddie will grow old like the rest of us and remain normal and healthy! Love you guys.
ReplyDeleteFather Time is not always a hard parent, and, though he tarries for none of his children, often lays his hand lightly upon those who have used him well; making them old men and women inexorably enough, but leaving their hearts and spirits young and in full vigour. With such people the grey head is but the impression of the old fellow's hand in giving them his blessing, and every wrinkle but a notch in the quiet calendar of a well-spent life. ~Charles Dickens
ReplyDeleteYou are doing a wonderful job of educating us all--thank you! We wish Maddie and all of you a smooth transition into her treatments. How wonderful to be surrounded by such a competent and knowledgeable team of specialists. You will all be in our thoughts and prayers as you move forward on this adventure. Love from the Doveys
ReplyDelete“The child must know that she is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like her.”
ReplyDeletePablo Casals
“We have two ears and one mouth so that we can listen twice as much as we speak.”
ReplyDeleteEpictetus
Thinking of the Crowleys today and hoping they are well.
We are so happy to hear this news! Thank you for sharing all of this, we are keeping Maddie and your entire family in our prayers! The Benders
ReplyDeleteWay to go Matt Crowley and Crowley clan---well said. Thanks so much for giving all the information and what a great way to explain it. We are all rooting for the your family and support you in any way possible.
ReplyDeleteThe Combers
Matt & Donna, It was truly an honor to meet your courageous and funny loving family last evening. I know I speak for our group when I say you are an inspiration to all of us. Hope to be able to introduce you to some other Pompe families in the future. Be well! Dan
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