It is hoped that this page will not be one so much of sadness at the loss of our beloved, but rather a celebration of their lives. As with all our members, I will not put full individuals names or other identifying information on this site with out checking with family first. For those who have been reported to have died as a result of Marfan related issues, I will only put first name - city or region - date of death and age at death, until I have spoken with family and determined their wishes. If you have lost a loved one to this condition and would like a short bio, picture or notation posted, feel free to send them to oregonmarfan@hotmail.com and I will add them as soon as possible.

In Memory

This page was last updated on: April 15, 2006

It is hoped that this page will not be one so much of sadness at the loss of our beloved, but rather a celebration of their lives. As with all our members, I will not put full individuals names or other identifying information on this site with out checking with family first. For those who have been reported to have died as a result of Marfan related issues, I will only put first name - city or region - date of death and age at death, until I have spoken with family and determined their wishes. If you have lost a loved one to this condition and would like a short bio, picture or notation posted, feel free to send them to oregonmarfan@hotmail.com and I will add them as soon as possible.

Bill Gibson  -  December 1976 to July 1998

Bill had his first aortic dissection at age 18. He had "hurt" himself while at a swimming meet.  His mom had him go to the Dr. and he gave him a Bill a prescription for an anti-inflammatory, and told him not to practice swimming for a week - that it was a pulled muscle. That was on a Wednesday eve. By Saturday, he was so sick he thought it was the flu. By Monday, his mom had to take him to the immediate care center where they had her transport him to the hospital emergency room. They brought in a heart doctor that gave Bill a couple of tests and he came in to talk to his family. He asked how long has Bill had this condition? The family asked what condition? The doctor said he was 99% sure Bill had Marfan's. His family had never heard of Marfan's or the problems that it caused. He was airlifted to Portland Providence St. Vincent's to undergo a graph and valve replacement. He was given a 10% chance to even make it to Portland and get the surgery. He was in such wonderful shape being only 18 and a three sport athlete that he recovered well and fast.

He was so ashamed his body had failed him. He was put on coumeden and blood pressure medicine. He took his medicine at wrong times, and was more active than he was told he could be. He was a head strong young man, and hated being different from his friends. He was 21 in Sept 1997. He wasn't feeling well. At one of his regular checkups they told him he needed more surgery. He told his younger sister. She told his parents. He didn't want the surgery till he was 22, after Dec 7, 1997.  He told his family at Thanksgiving that he would be having surgery Dec. 11, 1997. After all morning of testing on the 10th, the family was given the death sentence. OHSU was not capable of doing the surgery. It was too extensive for them. His parents decided to get a second opinion at St. Vincent's. Two days later they talked to Dr. Floten.  He said it was also very risky but he would be willing to try after the holidays in January. They got and appointment for Jan 10, 1998. He was in surgery 17 hours. Dr. Floten said it was very bad. His tissue was really deteriorating and Bill wouldn't have seen his next birthday without the surgery. He was in critical care after surgery. He went into surgery again the next morning for a bleeder. He came out again in 4 hours. His dad stayed with him while they weaned him off the ventilator. His mom remembered it was so painful to watch him struggle. They sent him home Jan 23, 1998. He was very tired and very sore. His family noticed he just wasn't bouncing back like he did the first time. On June 22, 1998 his mom took him to the emergency room again. They didn't want to deal with him, so they airflighted him to Portland again. He spent 2 days in CC, and then up to a room for tests and pain meds. His mom was by his side for 11 days. He would wake up and give her the thumbs up sign that it would all be ok. After all that time, then the doctors insisted that it was a pulled muscle, and to sent the family home on June 30, 1998. Bill kept telling his mom it was a pain like the first time, but he told the family it would be ok. On July 4, 1998 he lost his battle at age 22. His mom said that his loss is so painful but if it could help one kid be diagnosed properly it would be worth it. She would like all who honor his memory to remember his carefree ways and great sense of humor. He did all he could in his short 22 years. He is greatly loved and missed daily. Mr. & Mrs. Gibson, Family & Friends

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Jason Lonewolf Hatfield 5/10/03 A gathering will be at 11 a.m. Monday, May 12, 2003, in Lone Fir Cemetery in Portland for Jason Lonewolf Hatfield, who died May 7 of complications related to Marfan syndrome. He was 28. Mr. Hatfield was born Jan. 25, 1975, in Fort Benning, Ga. He moved to Portland in 1994. He self-published several poems and was a photographer. In 1997, he married Angela "Scout" Tanzi. Survivors include his wife; mother, Wendy; and sister, Ashley Ferus. Remembrances to the Oregon chapter of the National Marfan Foundation. Arrangements by Wherity Family.

Jason - Beaverton - November 2004 - Age 18 Jason Lonewolf Hatfield - Portland - May 12, 2003 - Age 28 Christopher - Formally of Portland - February 2002 - Age 33 Maryann - Formally of Hillsboro - Sept 3, 2001 - Age 42 Jennifer - Seattle (family is from So. Oregon) - August 2001 - Age 37 Aaron - Wilsonville - December 2000 - Age 18 Marlene - Portland - December 1999 - Age 42 Micheal - Portland - August 1999 - Age 30 Pauline - Pendelton - July 1999 - Age 34 Bill Gibson - Kalamath Falls - July 4, 1998 - Age 22 Caroline - Milwaukie - June 1993 - Age 50