Trying to keep things in motion after I’m gone

I’m hoping that things will stay in motion to help my son get the answer to our immune deficiency after I’m gone.

If anything, I’m hoping that my death will be the final trigger to solve it–

I final wish is for my son to live a long and normal life, and that will only happen if we solve his immune deficiency.

Please send gifts to his PayPal account, noah_kp.

Unless a team of doctors put together a miracle, I will not be here very much longer.

I am so grateful to everyone who has helped me live on this planet and please know that I tried my best. I wish I could go back and do many things differently, but hindsight is always 20-20. I think I may have been too naive for my own good sometimes…I perhaps was never quite cut out for this world.

My struggles have been painful and ongoing, and I really hope my son benefits from my death by providing the final clues for doctors and researchers to find the answer.

I wish everyone all the best. Thank you for the gift of time.

I love you,


Begin forwarded message:

From: noah_kp
Date: June 20, 2013 5:10:58 PM PDT
To: Ryan Golhar <golharr>
Subject: Getting in touch with Dr. Kachru if necessary


I am in a very rough spell right now due to a deep puncture wound that I received in my foot Sunday night from a rotting piece of wood. My body can not fight this off.

We are doing what we can, but I just wanted to take a moment to thank you for everything you did, and I am begging you–pleading with you–to continue to solve this immune deficiency to help my son.

We present so atypically, it’s extremely difficult for doctors to understand that we are even ill–even deathly ill like I am right now–because of my lack of a fever and an elevated white cell blood count.

I wish I could put words around the intensity of the pain in my right lung that has come on fast and furious this afternoon. It is a vicious and overwhelming pain, and the ER doctor just does not understand that if is an acute infection lodged deep within my lung. He just can not believe that it is possible.

Thankfully, my primary care physician and my immunologist, understand how infections work within my body because they have lived through countless little and big infections. It has been nothing like this before.

I am begging and pleading and begging again to continue on with your journey. My son has a beautiful mind–he is a rare treasure–and he will do a lot of good for the world if given the opportunity. Please help him.

We are doing what we can to help me, but this is vicious and my body can only do so much. I could feel the weight on the ER doctors face that the medical institution does not agree that this is as acute as what it is. I am hitting the wall.

I wish you all the best and I am extremely grateful to you. Please follow up with Dr. Kachru, and she will get in touch with my friend Sabrina who will help Noah get the answer. She is a special person, and will continue to take Noah for follow up care. I know Noah will be okay if he is monitored closely by doctors on an ongoing basis. Keeping Noah’s relationships with doctors is critical to his long term survival, and she understands that.

Thank you for everything,


About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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