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Rainy Days Jonathan Bielert Fundraiser

Bielert Family Good News

On March 19, 2014 the Bielert family received great news. All three of the children tested NEGATIVE for Vascular Ehlers Danlos Syndrome.

This is an answer to prayer. Danielle wrote on Jonathan’s Journey Facebook Page, “Blessed are we, our children DO NOT HAVE VASCULAR EHLERS DANLOS SYNDROME!!!! All three were negative!!!! All THREE!!!!”

There are several ways we can help this family.

  1. Pray, pray, pray
  2. If you are interested in making a monetary donation, you can do so using the button below.
    Donate Button with Credit Cards
  3. You can also make a monetary donation using checks payable to Jonathan Bielert and mail them directly to Rainy Days Irrigation, 115 Sigma Dr., Garner, N.C.  Every dime donated is given directly to the Bielert family.
  4. If you hunt or know someone who hunts and would like to donate meat, call me at 919-779-9285. They do have the facility and equipment to process the meat. They live in Bunn, N.C.
  5. If you would like to make any other donations, feel free to contact me.

Lastly, Danielle has established a Facebook Page titled, “Jonathan’s Journey”. There are several Facebook Sites titled the same. If you select “about”, you will see the Rainy Days Irrigation website listed.

Thank you,
Rainy Days Irrigation

>> Follow on Facebook a chr


Rainy Days Irrigation, Inc. | 115 Sigma Dr. | Garner, NC | (919) 779-9285
Irrigation | Drainage | Backflow | Landscape Lighting

 
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Rainy Days Jonathan Bielert Fundraiser

Jonathan Bielert Fundraiser

Jonathan received his official diagnosis of Vascular Ehlers Dandros Syndrome (EDS), a rare genetic disease. He has many doctors at Duke but his Geneticist works closely with the Geneticist (Expert) at Johns Hopkins, so he is kept up to date with the latest research; however, there is no cure or treatment at this time.

Jonathan is currently getting disability through Rainy Days and is expecting to hear something from Social Security Disability soon. Jonathan was also able to obtain affordable health insurance through the Marketplace, even though the deductibles are very high and their out of pocket expenses will be a challenge. His wife, Danielle, recently began working with Lowes Home Improvement in the Garden Department. She has also accepted a part-time Customer Service Representative position which pays much better and she will be starting in a week.

Jonathan and Danielle, have met and devised a plan for the EMS Station that details specifics on how to handle an emergency should Jonathan need to be transported to a hospital. There are certain standard procedures that cannot be done on Jonathan and failure to comply with these directions could cost Jonathan his life in the event of an emergency.

The three children have been tested for EDS and they are expecting the results of the tests within the next few weeks. Jonathan spends his time with his family. He has gained back to his original 160 pounds. Some days he does really well and some days are extremely difficult with pain and other symptoms related to this disease.  On the good days, he enjoys working on projects around the house. He built his daughter a night stand and recently completed a chicken coup. On March 1st, they added to their family by bringing home chickens and are ready for fresh eggs. Jonathan and his daughter are also enjoying 4-H together. His garden is plowed and ready for planting. He recently posted a picture of his garden with a message, “Alright spring. I’m ready whenever you are, so hurry up.”

Through the donations that you have given, Jonathan and his family have done well from a monthly budget standpoint. They were even able to pay off most of last year’s debt.

Right now, their biggest financial burden lies with the deductibles and expenses related to their health care for 2014. In time, a treatment will be found. Right now, Jonathan has to be attentive to his body and know when to stop and when to seek medical assistance until a treatment and/or cure can be found.

Danielle wanted to tell everyone how much the donations have helped them. “Through our worst days we never went hungry, cold or unclothed. I am forever grateful for the kindness people showed to our little family. Hopefully we can keep our dreams alive and learn how to live this life without a multitude of tears every day! Reality is hard to accept. Yesterday our oldest son held Jon’s hand a little too tight and caused a vein to bleed, turn his hand purple and swollen which caused him to be in pain for hours, just a child holding his finger. Thank you again for all you have done. We are blessed!”  Danielle


Rainy Days Irrigation, Inc. | 115 Sigma Dr. | Garner, NC | (919) 779-9285
Irrigation | Drainage | Backflow | Landscape Lighting

 
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Rainy Days Jonathan Bielert Fundraiser

Jonathan Bielert Update

We cannot thank our Rainy Days family, friends and our customers enough for their continued support, prayers, and donations. There is no cure for Jonathan’s condition nor end to his family’s struggle.

We will continue to provide updates on Jonathan and his family here on our blog and in our newsletters.  Since our last communication, Jonathan has had one scare and took the ambulance to Duke but found that there was no internal bleeding, but it was pain associated with his condition. Jonathan’s wife, Danielle, recently shared that things were going better, that Jon had kept positive, was able to eat almost normal again but still has terrible stomach pain. He is getting around better but only for short periods of time. He is also having terrible pain in the back of his head that is constant, which comes from the inoperable aneurysms. Most recently, Jonathan has been experiencing memory loss as well. Some days are okay for Jonathan but two or three days a week he is so miserable in pain and he can barely move. On a good note, a company has adopted Jonathan and Danielle’s family for the Christmas Holidays. The kids will be provided for during the Christmas Season.

Danielle has found what should have been a part-time job, which was supposed to be enough to pay the light bill and other little bills while the fundraiser took care of other expenses such as rent and food; however, she is being scheduled to work 40 or more hours a week. This is impacting the time she has available to care for the needs of Jonathan and the children. With her still in the middle of massive amounts of paperwork, she is having trouble getting everything done. She has requested that her hours be decreased at work and this week, she has seen a small reduction.

The family is happy to enjoy these days together. Danielle is trying to get an appointment for Jonathan with John Hopkins. Should she be able to secure an appointment, the transportation, lodging and expenses with travel will have to be funded through the fundraiser. She anticipates this would only be a two day excursion.

On a personal note, we have been inspired to offer a way for everyone to help Jonathan and his family and have confidence that God will provide for their needs. They are unique and we often refer to them as “Little House on the Prairie”. Jonathan has always been a hunter and sees this as the way to provide meat for his family. He prepares and freezes meat that he kills and provides for the family for most of the year. They also grow their own vegetables and stock pile by freezing and canning. They are a family that doesn’t believe in waste. For this reason, I know that every dollar donated is used wisely and saved for what lies around the corner.

Our customers have been incredibly generous. One customer offered to donate their frequent flyer miles to Jonathan and his wife should they be able to secure an appointment with John Hopkins. Another customer offered to call someone they know in Baltimore that might be able to offer housing for them. An older, dependable minivan was recently donated to the family.

There are several ways we can help this family.

  1. Pray, pray, pray
  2. If you are interested in making a monetary donation, you can do so using the button below.
    Donate Button with Credit Cards
  3. You can also make a monetary donation using checks payable to Jonathan Bielert and mail them directly to Rainy Days Irrigation, 115 Sigma Dr., Garner, N.C.  Every dime donated is given directly to the Bielert family.
  4. If you hunt or know someone who hunts and would like to donate meat, call me at 919-779-9285. They do have the facility and equipment to process the meat. They live in Bunn, N.C.
  5. If you would like to make any other donations, feel free to contact me.

Lastly, Danielle has established a Facebook Page titled, “Jonathan’s Journey”. There are several Facebook Sites titled the same. If you select “about”, you will see the Rainy Days Irrigation website listed.

Thank you,
Rainy Days Irrigation

>> Follow on Facebook a chronicle of Jonathan’s journey through finding a connective tissue disorder diagnosis, treatment, and daily struggles.


 

Rainy Days Irrigation, Inc. | 115 Sigma Dr. | Garner, NC | (919) 779-9285
Irrigation | Drainage | Backflow | Landscape Lighting

 

 
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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


 

Rainy Days Irrigation, Inc. | 115 Sigma Dr. | Garner, NC | (919) 779-9285
Irrigation | Drainage | Backflow | Landscape Lighting