Yasick Family

Heartbreak of grandmother who's lost her husband, three sons and a grandson to vascular EDS.

When Darlene Yasick's husband Gene died in 1989 aged 48, the family was at a loss over what had claimed him so suddenly. Only years later did they learn he was killed by a rare and deadly genetic disease called Ehlers-Danlos Syndrome - and that it was only just beginning to devastate the family.

 

In 2006, Darlene's son Steve died aged 40 and in 2010, it claimed another son, 42-year-old Tom.

 

Still the disease continued to ravage her family - claiming the life of her son Michel, 49, this spring. And then on Saturday her grandson - Michael's son - Christopher passed away, aged just 25.

Heartbroken: Darlene Yasick has lost her husband, three sons and grandson to the same genetic disease

Loss: In 2006, her son Steve, 40, died followed by Tom, 42, in 2010. A third son Michel, 49, died in Spring

The family, who live in Chicago, Illinois and Wyoming, Michigan, have just learned that Darlene's six-year-old grandson also has the condition.

 

Speaking with WoodTV from her Michigan home, Darlene said it is like 'a nightmare and you can't wake up from it.

 

All of the men suffered from the most severe form of the disorder, vascular Ehlers-Danlos syndrome, which can cause the walls of the blood vessels or intestines to rupture.

 

The condition - for which there is no cure - can also weaken the heart's largest artery, the aorta, as well as the arteries to the kidneys and spleen.

Video courtesy of WoodTV8 in Grand Rapids, Michigan.

The disease affects connective tissues such as the skin, joints and blood vessel walls and its cause is genetic; if you have it, there is a 50 per cent chance your children will have it too.

 

'There is no treatment,' Darlene told WoodTV. 'There is no therapy. Right now, there is nothing if you have it you have it.

 

'For us, it's like, what's the end? It just keeps happening and happening until there is no one left for it to happen to.'

 

Despite the family's struggles, she said she is proud of the men in her family and the legacy they have all left behind.

 

'There is no way that I could have been prouder of them,' she said.

 

'Even though they were not here as long as we would have like them, they've left us with so much in memory and faith and the things they have accomplished.'

Missed: Most recently, her 25-year-old grandson Chris, pictured, died from Vascular EDS in October 2013

Sudden: When her husband Gene, pictured, died in the 80s the family were not aware of the disease

The family is still struggling with Christopher's death at Rush University Medical Center in Chicago in October 2013.

 

They remembered him as a promising photographer who achieved a civil engineering degree from the University of Texas before working towards a structural engineering Master's degree at the University of Illinois.

 

His devastated grandmother is trying to stay strong during this tough time.

 

'If you don't have hope, then there is nothing,' she said.

Ripped apart: Chris, right, and his father Mike, left, died within months of each other this year

Fears: Darlene, pictured with Mike, said she does not know how long they will continue to lose loved ones

Courtesy WoodTV8 via the Daily Mail, October 2013.

The Yasick's Road To Hope

Started in 2011 by members of the Yasick family, they are in search of a CURE for VEDS. 

Darlene Yasick lost her husband, Eugene Yasick, in 1989 at the age of 48. At the time, the cause of his death was not known, but was later determined to be Vascular Ehlers Danlos Syndrome.

 

Since then, the Yasicks have lost Steve, age 40, Tom, age 42, Mike, age 49, and Chris, age 25- all to VEDS.

Stephen Yasick, only 6, a grandson to Darlene, has also been diagnosed with Vascular Ehlers Danlos Syndrome.


EDS is virtually unknown, even in the medical community. There is NO cure and NO treatment. Life expectancy for someone with the vascular type is only 48. Little research is being done. Stephen already suffers from some of the side effects and will grow up without many options for help.

Because their goal is to raise money specifically for the vascular type of Ehlers Danlos, all donations they receive will be sent to Dr. Hal Dietz at the Johns Hopkins University School of Medicine. There, Dr. Dietz and his team have been the leaders in the research for VEDS, developing the first mouse model of the disease in 2010.

 

Dr. Dietz is especially interested in the similarities between Ehlers Danlos and another connective tissue disorder, Marfan Syndrome, as there is a possibility that the treatment now being tested for Marfan Syndrome could be used with patients with Ehlers Danlos as well.

 

Although they have accomplished a great deal, there is still a long way to go in finding a cure. Raising as much money as we can will help immensely with that effort.

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