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Local Boy with Disfiguring Disease Refuses Surgery….. November 11, 2016

Posted by Tantumblogo in awesomeness, Dallas Diocese, Domestic Church, family, General Catholic, Holy suffering, Latin Mass, manhood, mortification, persecution, sadness, sanctity, Society, Virtue.
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…….so he won’t lose his smile.  This is a bit different for me, but we’ve seen this family around occasionally at Mater Dei and while I’ve never had the opportunity to speak with them, their story is quite inspirational.

Ethan D’Amato was born in 2003 with obvious defects.  He was diagnosed with neurofibromatosis type 1, which causes tumors to grow on nerve endings on his face.  He lost his right eye and obviously has some disfigurement of his face. But he refused surgery to remove the tumors because it likely would have left part of his face paralyzed and left him unable to smile.

He has received a fair amount of media coverage but I had never heard of him until earlier this week.  There is a Youtube channel dedicated to sharing aspects of his life and helping spread awareness of this disease.  There is also a GoFundMe page which I think is still active.  Apparently the boy has experienced bullying or negative reactions caused by his appearance, which is a tragedy but typical of human nature.

Some videos on his situation and experience below:

One way we’ve seen Ethan around Mater Dei is through violin practice he takes there.  He’s quite a good violinist for his age:

Not sure if I can get this video to load.  Not a big fan of Maury Povich or any shows of that type, but here is some background on the bullying Ethan has suffered:

That’s an inspiring boy and family.  I commend them for their faith in our Lord and trust in His will.  That is a heavy cross to bear.  I don’t know if I would bear up under that load as well as they seem to.  God bless them.

Shoot, I meant to include this prayer in the post.  Updating now.  A prayer to Our Mother of Sorrows composed by Pope Pius XII:

O clement and pious Mother, whose soul was pierced by the Sword of Sorrow, behold us poor sick beside you on the Calvary of your Jesus.

We, chosen for the sublime grace of suffering and desirous of fulfilling also in our own flesh that which is wanting in the Passion of Christ, for that body of His which is the Church, consecrate to you our persons and our sufferings, so that you may offer them both on the altar of the Cross of your Divine Son as the humble victims of propitiation for our spiritual well-being and that of our brothers.

Accept, O Sorrowful Mother, this our dedication and confirm in our hearts the great hope that, as we share the sufferings of Christ, we may thus share in His comfort here and in eternity.  Amen.

Comments

1. Margaret Costello - November 12, 2016

Sweet, sweet boy. God bless him and his dear family:+)

2. Barbara Hvilivitzky - November 14, 2016

This is a potentially fatal disease as the tumours grow and grow and can cut off airways. I have seen several documentaries of doctors trying to help children like this little boy – free medical care, surgery and follow up – in Third World countries.

I wonder if it’s prudent to allow him to make medical decisions. This is supposed to be a feel-good story but it makes me sad. I suspect that doctors have already told the parents that surgery will not help in the long run. Putting it that this little boy can make a serious decision like this because of something so superficial as the ability to smile is bizarre to say the lest.

I mean no lack of compassion or charity! I have children myself. These parents obviously mean well but the message coming out of this (especially putting the weight of the decision on the boy) is the wrong message.


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