While in hospital, his health deteriorated dramatically and although he had an extensive medical team researching his symptoms, they could not pinpoint a definitive diagnosis. The trauma he suffered from the accident had triggered a hyper sensitive immune system response, causing all sorts of issues with his organs along with other symptoms...
Tyler has undergone a multitude of tests over the past two and half years but has received no treatment. He has continued to be monitored by the wonderful doctors at Cancer Care Manitoba here in Winnipeg, Manitoba Canada where we live.
There are no words appropriate enough to explain the heartbreak of a parent who is fighting for answers while watching their childs health deteriorate. So many unknowns... Symptoms which affect his quality of life.
Recently, a bone marrow biopsy was performed and it showed "active HLH"
Pronounced: HEE-moh-FA-goh-SIH-tik LIM-foh-HIS-tee-oh-sy-TOH-sis
Hemophagocytic lymphohistiocytosis, also called HLH, is an immune deficiency disorder. In this type of disorder, part of the immune system is missing or defective. That means the body can’t fight infections as it should. As a result, a person with HLH may have frequent infections that are generally more severe and last longer than usual.
With HLH, certain white blood cells (T lymphocytes and macrophages), are turned on and build up in organs including the skin, spleen and liver. These cells then destroy other blood cells such as red blood cells, platelets and neutrophils. HLH is life-threatening. HLH can lead to liver failure, breathing problems, inflammation in the brain, and the inability to fight infection. Prompt treatment is very important for patients with HLH, as the condition is often fatal.
Please see link attached for more information of this rare and devastating disorder.
Tyler needs to be seen at the Cincinnati Children's Hospital. The most experienced facility in the nation in treating HLH, Cincinnati Children’s has assembled a team of researchers and doctors to create the HLH Center of Excellence.
Unfortunately, little is known or understood about HLH in Canada. In fact, the bloodwork which was needed to assist diagnosis had to be sent to the US for processing because there isn't a facility nor specialists in this field available anywhere in Canada.
As this diagnosis has just been confirmed, Tyler has recently been approved by Manitoba Health to attend for assessment at the HLH Center of Excellence, in Cincinnati, Ohio.
This means, the medical expenses associated to Tyler's assessment will be covered but Cross border assessments/treatments can be tricky, at best.
There will be extensive expenses incurred for travel and accomodation and no way of knowing how long we will have to stay.
Writing this and asking for help has been the most difficult decision I have ever made.
As parents, we will do everything in our power to get our son the best and most timely care possible. Too much time has already passed and his health is our #1 priority.
We would be forever grateful for any help you may be able to offer. Thank you from the bottom of our hearts.
Deanne Jur & family
- Alex and Jenna Babinsky
- James Kay
- Darlene Catrysse
- Dana Kapusta
- Cindy Bartley
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