Earlier this year filming started on “Extraordinary Measures,” a new movie about the true story of John and Aileen Crowley, whose children were diagnosed at a young age with Pompe Disease, a rare lysosomal storage disorder. The story follows John Crowley (played by Brendan Fraser) as he leaves his job as a high paid executive to seek a treatment for Pompe with the help of a maverick scientist (played by Harrison Ford). The film is expected to be released April 2010.
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COMMENTS
John, I am a former Norwood Public School classmate and I just wanted to share with you how touched I am by your story. Really there are few words to express what a remarkable family that you have. I get chills every time I see the trailer for the movie and look forward to seeing it when it comes out. I hope and pray that your children and others children effected with Pompe diseases continue to reap the benefits of all of your amazing work.
i will continue to pray for your continued success and for your wonderful family.
God Bless,
Terri McKeever (Widholm)
Dear Mr. Crowley:
I just extraordinary measures on Friday, I was so touched by your families story. I had never heard of Pompe disease and I came away with a greater understand. I to am a parent and would do anything in my power to help my daughter. Thank you for allowing everyone to hear your story.
I will pray for you and your family.
Thank you,
Debbie Maratta
I understand that you seek cures for diseases that are genetic. My husbands family was diagnosed with hereditary polyps in the intestines. He had 6 siblings and 5 of them had this. The way they live with this is to have theirentire large intestine removed and get an colostomy. 5 of them have died before the age of 65. I have a brother-in-law that is dying now. Our 3 sons were diagnosed with this awful disease. They have now learned how to rebuild the small intestine and make a bowel but it is still hard to live this way. My concern is for our grandchildren. We have 6. The oldest is 13. They will begin testing her soon. I know their is a cure for this disease but no one is working on it. It there a possibility that your company is working on this? If so please let us know. It is a deadly disease and I would love to spare my grandchildren of some of the things my husband and sons had to go through. The name of the disease is familpolyosis I think. I know I didn’t spell it correctly. We call it hereditary polyps. Please help us.
Wanda McClintock
We are unaware of any research that is being done at Mount Sinai School of Medicine relating to this disease specifically (Our Foundation supports Mount Sinai and their research efforts. We do not undertake any research on our own). We recommend that you speak with your doctor to find out where you can learn more about the disease and to see if he or she is aware of any medical schools or institutions that are working on treatments or a cure. You may also want to learn about genetic testing options for your children for the future. Our Know Your Genes website (http://www.knowyourgenes.org) has information on this topic and can help direct you to a genetic counselor who can provide valuable information and advice for your family.
You are amazing Crowley family!!!
Thank you for sharing your story, it is truly inspiring. Words really can’t describe what an amazing feat this is. This is what life is about-
love, The Beattys
Just watched the film ‘extraordinary measures’ and was truly inspired and moved to tears.
Our little boy also suffers from a life-limiting rare genetic disorder of which there is no cure. He has NKH – non ketotic hyperglycinemia. This disorder is similar to Pompei disease in that the root cause is the lack of an enzyme – in my little boys case – the enzyme that removes glyceine.
Do you know if any research is being done to aid treatment with this disorder? Might it be addressed in the future?
The film touched a nerve with us as we feel similarly without hope as the Crowley family did.
Emma, Paul and Joseph Kendrick