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
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