When Jordan was born his pulmonary valve in his heart didn't open like it should have. So, at 5 days old he had his first open heart surgery, then at 13 months he had his second. For the next 9 years he did well, not perfect, as he had annual tests and doctor visits. Then at the age of 11 he was diagnosed with erythema nodosum, an immune response, after months of unexplained symptoms. Months later we noticed an enlarged lymph node on the left side of his neck. Concerned we took him to the doctor, which reasured us it was only mono and would heal easily. Unfortuntely, this was not the case. In July of 2012, after surgically removing the lymph node, and several tests, he was diagnosed with Nodular Lymphocyte Predominant Hodgkins Lymphoma, a rare form of cancer. After several months of chemotherapy, Jordan was cancer free by the end of 2012!
With the relief of the cancer free news, we thought we could finally relax. However, the summer of 2013, he was coughing out a stringy tissue like substance, and in October, he was diagnosed with an extremely rare lung disorder, called Plastic Bronchitis. Jordan's body creates a protein based plug or cast inside of his bronchial tubes, causing him to have to forcefully cough them out, resulting in lowered oxygen levels and the fear of obstructing his airway.
He was put on numerous medications, oral and breathing treatments. At first these seemed to be helping. Because this is such a rare disorder, the doctors couldn't tell us why his body was making them or how to make them stop, all they could do was treat the symptoms. Unfortunately, after about 8 months things changed, and the meds didn't seem to be working as well anymore. After almost 2 months in and out of the hospital, new treatments, and tests, his doctors found a group of doctors at the Children's Hospital in Philadelphia studying the lymphatic system and it's link to Plastic Bronchitis. Encouraged for the first time in over a year that we might actually get some definitive answers as to what is causing this and how to stop it, we will be journeying to Philadelphia on December 22nd to be admitted. On December 24th he will have a lymphatic imaging scan that will be checking his lymphatic system for leaks, if they are found they will be able to seal them, hopefully stopping the production of the casts, potentially being a lifesaving procedure for Jordan.
Our family has a strong faith in the Lord, and we know that He has stood with us through it all. With the many hospital stays, procedures, and treatments our family has had to be separated many times over the last few years. With this new procedure coming at Christmas time, our family will once again be separated. We know we can come together again after his procedure and celebrate our Lord's birth. However, we would very much like to be able to afford to make sure Jordan can be with his mom, dad, and sister while he spends the Christmas holiday in Philadelphia. So, I come to you now asking for your help to make a little boys Christmas that much easier and special while he undergoes this procedure. Any donations are greatly appreciated and any remaining funds after Philadelphia will go to cover his many medical expenses. Thank you and God bless.
- Ruth Lautzenheiser
- Brianne Frazier
- Melvin Bowers III
- Shannon Middleton
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