Fast forward 8 years. Jonah is like any typical 8 year old boy who loves to build with Legos, play laser tag and Minecraft - all those activities that a rambunctious 8 year old boy loves to do! He has dreams of the many things he wants to do when he grows up like become a contortionist and a doctor, among many other dreams. However, the Slack family has just recently realized that most likely none of these dreams will be a reality for Jonah. All of Jonah's life he has battled severe allergies and eczema with many different treatment modalities. These treatments would be effective for a short while; but eventually Jonah would begin displaying symptoms again with no clear answer as to why. He has battled his entire life with recurrent severe lung and skin infections, severe atopic dermatitis, arthritis, and much more – to the point to which Jonah has not been able to lead a normal life. He has missed much school, been unable to participate in several activities, and suffers daily pain and relentless itching that never stops.
The Slack family recently got the answer to why no treatments have been effective when, after arduous testing, Jonah was diagnosed with Hyper IgE Syndrome (HIES). While I won't go into great medical detail as to what that consists of, I encourage you to do some research as it is quite an extensive disease. In short, it is a very rare primary immunodeficiency illness with the life-long risk of developing fatal complications; a shortened life span is common with most patients not reaching adulthood. Based on Jonah’s medical history, complications, and diagnosis, doctors have told Derek and Shawna it is possible that Jonah has already lived over half of his lifetime - at the age of 8 years!
This disease is not curable and causes Jonah much discomfort most days due to severe skin irritation covering his entire body as he is very susceptible to infection and allergens. He is unable to combat the slightest injury, allergen, or infection. Jonah will require constant, relentless vigilance to his care due to the continual danger of life threatening infections. Jonah's parents are doing everything they can to provide the best quality of life for the remainder of Jonah's time here on earth. This means a strict regimen of special bathing and wrapping his skin twice a day; trying their hardest to protect him from environmental triggers, while at the same time trying to allow him the opportunities to enjoy those activities all children love so he can live his life while he can.
As you can imagine, doctor's appointments and treatments are endless. They will see specialists in several different departments including immunology, dermatology, cardiology, neurology, pulmonary, and more. His current skin treatments are 3 times a week with many more appointments coming. Every new infection, allergen or injury requires immediate treatment in an effort to prolong his quality of life. Insurance has been less than helpful in covering these mounting medical expenses. They need their home to be a "safe-haven" for Jonah which means they are in need of an air filtration system, new windows, and some repairs to help decrease the amount of allergens and bacteria within their home. As you can see, their needs are great, and I have only touched on a few key points. Would you please consider a donation to help Derek and Shawna as they so desire to give Jonah the best life possible?
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