It was very small (about the size of a half dollar) and we were told not to worry. For years we watched it grow on his arm and progressively get worse. I asked every time I went to the doctor with him and was always told not to worry. Our first indication should have been a year and a half ago when Hunter was diagnosed with a blood clot in his arm but even then we were told it was a mild hemangioma. We were given medication for him to take to dissolve the clot and told to make sure he wore a compression sleeve during sports. We did exactly as we were told in hopes we would no longer have any problems with that arm. We were obviously wrong.
Although a hemangioma is in the same family as a vascular malformation it is a much different kind. Hunter's malformation now goes from his wrist all the way to above his heart and it is rapidly still growing. Venous malformations are slow-flow vascular malformations due to abnormalities in the development of veins. It causes Hunter to have limited blood flow, loss of muscle and strength in his arm, no pigmentation (which could result in skin cancer in the arm), and seizures. The doctors more prominent concern is if the malformation continues to grow and reaches his head it could result in irreversible neurological problems as well as if Hunter develops another clot it could affect his heart.
As you can read we have had a lot to process in a short period of time. Hunter requires surgery to fix this. The specialist in Georgia would not perform the surgery due to the risks involved and referred us to the Childrens Hospital in Ohio whose specialty is vascular problems in children. The vascular doctor in Ohio then referred us to Duke University Medical Hospital where we have been told have some of the best surgeons equipped for this kind of surgery. We were supposed to leave Friday to head to Duke. However, Hunter had another seizure on Thursday morning which landed us back in the hospital. The doctors at Duke want Hunter's seizures under control before the surgery so he was hooked up to a monitor for 72 hours to monitor his brain activity. We still do not have the results back yet. It is possible that Hunter will be scheduled for surgery on 12/23/13 and will miss our Christmas family traditions and he is heartbroken. We were also just made aware that insurance will not pick up the last portion of his surgery as it is a three part procedure. Our only option is to pay out of pocket because we can not risk anything else happening to our sweet boy. Not only that but it is projected that our stay may be as long as a month without pay for Monte and myself putting a financial burden on us both. After already having an extremely tough few months medically our savings account and finances are depleted. After a lot of prayers and few options; here we are asking for assistance in helping to raise funds. It is extremely hard to sit on this receiving side as we are normally the ones donating to others in need. Now we are the ones in need but we know God will provide.
We are asking for continued prayer for God to restore our precious boy to health and safe travels to and from Duke. We know our God is a Mighty God and with him all things are possible. Please feel free to share our story and put us on your prayer list at church. If you would also like to make a donation you can do so safely on this page. All funds will go directly to his surgery and recovery fund. Please do not feel obligated because prayer is of course our first request. However, if you are lead to donate please keep in mind no amount is to small. Every single little bit helps. From the bottom of our heart, thank you for making this possible. Good bless each of you.
- Barbara Ergle
- Michael Macaluso
- Shea Frazier
- Cason , Caden , Melanie
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