Jonathan Bielert Fundraiser

Rainy Days is not only a business. We are a family, close friends, a team made up of exceptional people who support and care for each other.

Jonathan Bielert is an employee, a member of our family and he needs our help right now. He is currently unable to provide for his family due to the horrible genetic disease Ehler-Danlos Syndrome. We have started this page in an effort to raise funds to help him and his family out in their time of need. Please donate to the cause using the button below. All proceeds go directly to Jonathan Bielert and his family.

About Jon:

30 year old Jonathan Beilert has been married since February 2007 and has three wonderful children ages six, three and two. Aside from his bad knees as a result of his flat feet, he had always been healthy. He is a hard worker and was the provider for his family, which allowed his wife to be home with the children while they are little.

When Jon was only 23, Two short months into his marriage he started to cough up blood while at work. He rushed to the ER to learn he had a softball sized cyst that had ruptured. This caused him to have surgery in which they removed the whole lower left lobe of his lung, and he was diagnosed with emphysema.

A year or so later in 2009, Jon was getting ready for work one morning and he sneezed. At that moment his lung collapsed. Instead of going to work he found himself again in the emergency room. At this time the worry started and the possibility of a genetic cause was put out there, because young healthy men just do not get these types of  problems.

In 2010 while expecting his second child, Jon became sick again. This time it was crippling stomach pains that brought him back to the hospital. After a few hospital trips within two months there were no answers and for then at least no new problems.

2011 came with intense migraines to add to his stomach pains and lung problems. At this point the doctors suspected a connective tissue disorder.  Jon was hospitalized for five days for testing in hopes to find some answers.  With over two hundred types of connective tissue disorders out there and the insurance costs, Jon and his family were only able to pursue a few. The few tests that they were able to get done, all came back negative. Jon and his family were once again left with no answers.

September of 2013 things got much worse. After a week or two of Jon having difficulty breathing and eating, he started having horrible back pain. Again Jon was admitted to the hospital. Now at Wake Med Jon required a life saving angiography procedure to insert coils to stop the internal bleeding  from a ruptured aneurysm in the artery to his spleen. The scans also unveiled his body was now covered in aneurysms and his whole vein/artery structure was compromised. Five days later, while still in the ICU, his mammoral artery ruptured resulting in another procedure. Wake Med was not equipped with the proper equipment or doctors to care for such, so Jon was transferred to Duke where he spent 11 more days. During that time another rupture occurred, this time to the artery leading to his liver. This was a result from his last procedure at Wake Meds and his fragile veins.

Four procedures, three ruptures, four blood transfusions, endless testing and 19 days later Jon was released with genetic tests pending for Ehler-Danlos type 4 (vascular) with a possibility of an even more rare condition. The genetic results will take up to four months to get back. So as of today (October 29th, 2013), Jon and his family are still waiting for the results.

About Ehler-Danlos:

Ehler-Danlos syndrome is a group of connective tissue disorders that affect the amount of collagen your body produces resulting in fragile skin and easy bruising. The vascular form is a more severe type that results in ruptures occurring within the walls of your blood vessels and intestines. The skin and blood vessels are too fragile for stitches and present problems with care. It is an inherited genetic disorder. Children of a parent with EDS type 4 will have a 50% chance of inheriting the disease. There is no treatment. There is no cure.

Although all types of Ehler-Danlos are potentially life-threatening, the majority of individuals will have a normal lifespan. However, those with blood vessel fragility have a high risk of fatal complications. Arterial rupture is the most common cause of sudden death in EDS. Spontaneous arterial rupture most often occurs in the second or third decade, but can occur at any time. The average life-expectancy for Vascular EDS is 48 years.

Jon’s Current Condition

He currently has two large aneurysms in his brain. One in his carotid artery and multiple others including one to his left kidney that if it ruptures it will cost him his kidney. He is very weak from the hospitalization, has blood clots in his lung, and arteries where the catheters were placed which is a result of the disease. Jon continues to have constant pain from the leftover blood in his abdomen, along with difficulty eating and walking.

Jon is currently at home with his family and is to avoid any strain on his body. They are taking it day by day but are finding it hard to adjust to their new life and the unfortunate health issues that are here to stay. There is no cure or treatment for the disease and only in life threatening situations will doctors even try to help him due to his body being so compromised. Any procedure or treatment will only create more problems. For this reason the doctors sent Jon home with brain aneurysms in tact.

Why The Bielert Family Needs Your Help:

Jon was the provider for his wife and three young children. We are holding a fundraiser in his name to help his family. Now that he is unable to work (or even do much less) the Bielert family is having to substitute his income while managing to not only take care of their father and husband, but also enjoy precious moments with him while they are still able too. Please use the donate button below to make a donation to the family if you choose to do so. Any amount that you would like to give is very much appreciated and will be a huge support for the family at this time of need.

Donate Button with Credit Cards


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