Never Give Up....

Just a quick update on Talan. In the past few months he has actually been diagnosed with HES (Hyper Eosinophilia Syndrome) this attacks his tissues also and turns them hard to, and can make you very sick and especially nauseous all of the time. He is affected everywhere in his body with it. His stomach and especially is lungs are affected. He recently had a CT scan that showed he has eosinophil pneumonia. This means it is turning his lungs hard and he has widespread air trapping in his lungs. He says it feels like he his breathing through a straw. He is on 5 liters of oxygen full time and has a hard time getting around. Most of his time is spent gaming on xbox live with his buddies from around the world. They have no idea the impact they have on him. They are his lifeline. Talan struggles daily to breathe, to eat, to get around, and sleeping. He is so miserable but makes the best of his situation. Some of the pictures above are to show you how his body just gains weight and he cant control it and as fast as he gains it the faster it goes hard.
Talan's eating has started to become and issue a recent endo scope has been done and he is turning hard all the way through the digestive tract and its hard to swallow. He has high amounts of eosinophils eating away at his stomach. We are in the process of getting him approved through insurance infusions to help his disease slow down. It is called interluekin 5, but its not promised to help him. IF not he will be eventually looking at a feeding tube in the near future.
Our time is spent a lot at the Dr and no it is not fun and he hates nothing more than to have to go. I cant blame him at all.
Today Talans' dad Stan was able to meet with President Donald Trump for a health care briefing at the White House. He represented Utah, our son and all those affected by our health care system. Thank you to Stan, Talans' dad for going and letting his voice be heard on rare diseases! Watch Stan talking with President Trump at this link: https://www.facebook.com/BoxElderNewsJournal/videos/10158434493210436/

Tonight on channel 5, KSL Talans story will be updated on the 6:30 news cast. I help advocate for rare diseases through Utah Rare and Im on the advisory board for RUN rare and undiagnosed diseases. Without the help of the rare community I would be lost. Its such a lonely world out there when your affected by a rare disease. Please know there are so many others of you out there that feel alone there is help, just reach out to me and I will help you find support groups. Talan has a facebook page called Talans fight-never give up. It should be posted here on his blog. Watch the KSL video at this link:
http://www.ksl.com/?sid=43484836&nid=148&title=utahraretakingitsmessagetonationalaudience

Last and not least Talan has a dream to go on a fishing trip to Alaska, we are in the process of applying for his wish to come true. It is very hard for Talan to travel anymore and we would love to help him have his wish come true before it gets to a point he cannot do it anymore. He is about there. Please keep Talan in your prayers, he could use them to fight his daily battles!
Thank you to Sandy at channel 5 KSL news for doing his story and following him on his journey battling for his life!
Love always,
Talans Mom, Jen