Aaron Foppe

There is an old saying in medicine “when you hear hoof beats, think of horses not zebras”. But what if you’re the one zebra in a herd of 50,000? Say hello to my son, the zebra. He is three and a half and has a condition known as Common Variable Immune Deficiency.

Essentially, the instructions that make an immune system were just left out of his genetic blueprints. He undergoes treatment every week to replace it, but even so he is sick nearly constantly. Everyone in the pediatrics ward is on a first name basis with me and my family. We’re there anywhere between one and three days a week. But even when home, my wife and I spend a lot of time disinfecting the house.

It’s not exactly a lifestyle conducive to friendships. In the beginning, everyone offered well-intentioned advice: “Don’t give up on a miracle from modern medicine or God”, “There is always light at the end of the tunnel” and my favorite, “Remember, this too shall pass.”

But friendships melt away when I explain that this won’t pass for my son, that it will kill him. Yes, it will eventually pass for me; statistically speaking, as zebras of this breed have an average life expectancy of 42.

People disappear when you tell them that a miracle from modern medicine will need to come in the form of reprogramming his DNA or a complete bone marrow transplant. The former is a fairy tale and the latter has about a 90% fail rate and means a greatly diminished quality of life for those unfortunate enough to survive it.

Zebras know a truth, unfathomable to most, which is that sometimes there truly is no light at the end of the tunnel, nor will there ever be. The lesson that my zebra has taught me is that if it’s only going to get worse from here, then the best moment of our lives is now.

When I am lying with him in the hospital bed, I do everything I can to be with him completely. I feel his heartbeat, and I watch the particles in the air move when he breathes. When I do this, the tunnel vanishes all together and we become immensely alive, for this moment and not any other.

With a Perspective, I’m Aaron Foppe.

Aaron Foppe is a salesman. He lives in Santa Rosa.

  • GoodNeighbor

    Dear Aaron,
    I am sitting here in the kitchen and I just heard your perspective. As a mom dealing with a cancer diagnosis (thankfully in remission), I just want you to know how much I empathize with your zebra. Here, now, is all we have. I have a 12 year old daughter and I grab time in fistfulls. May each breath be a wreath to you, your son, and the love you share in this short time we all share. Love out.

    • Franz Bruckner

      Hi Aaron:
      Your message was very said, yet very hopeful to me. As a father of two daughters, I don’t always make or take the time to just “Be” in the company of my kids, be present to one and other, and live in the moment. I love my kids dearly Your message this morning truly inspired me to try and enjoy every second of time I have with my kids (and extended family and friends for that matter). It is so easy to take each other for granite, put off spending time with each other, etc… You helped me (and others I am sure) to focus on the “good stuff”. That is just giving time to the ones you love and living life to the fullest at every moment possible.
      Thank you for your very inspiring perspective. You are a true role model for living in the moment.
      Franz
      Franz Bruckner, Newark

      • Aaron Foppe

        Thank you for your comment Franz. This was exactly my hope with doing this segment, that it would be a reminder that the pieces of our lives which are most important are the ones deserving of our present selves.

    • Aaron Foppe

      Thank you GoodNeighbor for the kind words. May your cancer stay in remission and you have many, many more fistfulls of time and love with your daughter.

  • C Bradley

    It was sad hearing the despair in your voice as you related your son’s situation, and you have every right to feel that way. Three thoughts that help me when dealing with impossible health consequences: Isaiah 33:24, Revelation 21:3 & 4, and Acts 24:15. While this doesn’t change the now, the future looks bright here on earth where these things are happening. Hope this helps you, too.

    • Aaron Foppe

      Thank you very much C. Bradley. Bless you.

  • Kathleen Ryals

    Thank you Aaron for sharing your story this morning. I was driving to work, fretting about all sorts of things, and your voice came over the wire. So calm, so clear, so dedicated, so loving, so honest. I could feel the moment in the hospital with your son, see the air moving as you breathed in and out together. Feel how present you were. You are the light for him and I am sure for others. You were for me this morning, in that moment and in this one. Thank you thank you.

    • Aaron Foppe

      Hi Kathleen. You are most welcome. If my story can help remind anyone to live in the moment and keep the important things in perspective, then it has been a story worth telling. Its been a pleasure to be a light in your day.

  • Gorry James

    Thanks for Sharing Aaron. When faced with a recent health crisis with my son, I’ve also contemplated this fate of “What if there is no light at the end of the tunnel”. It’s an incredibly crushing feeling. We so badly want our children to be healthy, happy and thriving. There’s nothing worse than seeing them suffer, or the realization that they may not have anything close to the life we imagined for them. You show some truly inspirational strength and wisdom, by embracing the present and sharing your story. Thank you again.

    • Aaron Foppe

      Gorry, I’m sorry you have felt this first hand. It’s not a natural feeling at all. I think we’re all wired to look for endless optimism, but at some point we all have to recognize that we can’t go on digging in “the tunnel” indefinitely. Even the strongest muscles can’t flex perpetually. That realization is as you say, crushing. But there is great personal power in giving ourselves permission to break down and to be strong 99% of the time instead of 100%. A moment of personal vulnerability can be the best medicine for those experiencing ongoing personal tragedy. Best of luck and wishes to you and your family, Gorry.

  • Scientist and Mom

    A new medicine breakthrough called CRIPR/Cas9 may become a path….

    • Aaron Foppe

      Thank you for sharing this Scientist and Mom.

  • Long

    At birth, my second son was diagnosed with a rare genetic disease, neurofibromatosis which cause cause abnormal growth of nerve system anywhere in his body and had no treatment. My wife lived under depression for some time. But, we made it through. A lot of tears and hard work.

    My son just graduated from SJSU last year and is working just like ordinary people except a tiny trace of his speech. He worked hard to overcome many symptoms associated with this disease. We were there every step behind him during his struggles. He loves us so much.

    And, he is worth every minute of my life.

    Aaron, I know you feel the same as I do.

    • Aaron Foppe

      What a wonderful story Long. Congratulations to you, your wife and your son for such an achievement. I’m sure your son is very grateful for you and your wife spending your lives securing his well being. Its a life of indescribable personal hardship, but one you would have done all over again without a second thought. I do feel the same as you.

  • Julie

    Thanks for sharing your story Aaron. I love your perspective.

    • Aaron Foppe

      Thank you very much Julie.

  • Another Mike

    Hang in there, buddy.

    • Aaron Foppe

      Thanks Mike, I appreciate it.

  • Paolomee

    Thank you for sharing this, Aaron. Love your Zebra.

    • Aaron Foppe

      You’re welcome Paolomee. Thank you for taking the time to comment.

  • Ramana Nareddy

    This is very inspiring. Struggles like these makes one stronger. I wish you and your family all the very best.

    • Aaron Foppe

      Hi Ramana, very true. Thank you for the thoughts and well wishes!

  • Michelle Rosecrans

    Hi Aaron, I was so moved hearing your “perspective” yesterday. Your last paragraph, wow. Your ability to be in those moments fully is amazing to me. When I heard your story I was in a moment of stress driving to work, worrying about all the trivial things that, at times, seem so big. Then I heard your perspective, and all that worry melted away. Thank you for sharing your zebra story and for reminding us all of what truly matters most.

    • Aaron Foppe

      Michelle,

      I’m so glad my story was able to reach you and that you found value in it. One of the things I’ve learned is that strife is all relative. Sometimes I overhear people talking about their problems in the grocery store or in a coffee shop and I think to myself “what a non-issue that is”. But to them it is a big deal and I don’t really have the right to diminish their life challenges because they are different from mine. Sure, I may carry a larger boulder than they do, but it doesn’t necessarily mean that theirs is easier for them to carry than mine is for me. It is important to keep perspective on the things that matter, but it’s also okay to recognize your own challenges as valid. Thank you for sharing your thoughts on my perspective with me.

  • Vinay

    Hi Aaron – I was heading to work this morning, concerned and apprehensive about the day ahead, due to deadlines, presentations to make etc. And like everyday I was listening to perspectives today as well. While listening to your narrative and the attitude you have to your family situation, I was reminded how trivial and insignificant my worries and concerns were and my outlook for the day improved immensely. Thank you for sharing your perspective, it truly did put my day in perspective and made it better. I wish you and your family all the very best and hope a cure is found soon.

    • Aaron Foppe

      Vinay,

      Thank you for listening. I’m glad that my story helped to make your day better. For me it’s such a deep honor that so many people have reached out found a renewed perspective on the things that are important in life; folks such as yourself, Michelle Rosecrans and everyone else commenting here. For me it validates that this is a story that should be told. I have to admit, when I went to KQED to record and I was sitting in front of the microphone, all I could think about was how much this is going to put people in a crappy mood before work. But I did it in the hopes that it would be a beneficial and healing piece for at least a few people. It’s been an absolute delight that so many people have related to it and found value in it. Thank you.

  • Anna Chodos

    Aaron, Thank you for your beautiful perspective and for sharing your family’s story with all of us who listen. So so so so so many of us are going through similar things, however the details may vary. By sharing your story you connect us all in some way. There is nothing more comforting to all of us who are struggling through tough times than to just share and be open and be honest. It may seem that there is no hope, but lately I am reminded that hope is not about miracles or cures. It’s about believing that there is a future, even for 1 more minute or 1 more day. It is uncertainty’s closest companion. I have no doubt your son is an amazing person and I am so glad to have heard his and your story. Take care!

    • Aaron Foppe

      Thank you very much Anna. I’m glad you connected with my story. It’s true, so many people are coping with so many silent and invisible challenges and I think it’s very easy to see everyone getting along in their lives, not talking about it and perceiving that we are alone in our strife. The irony is we are alone, together.

  • Marcia Boyle

    Aaron, we at the Immune Deficiency Foundation were sorry to hear about your son’s situation. As the national patient organization for primary immunodeficiency diseases, including CVID, we are eager to serve as a resource for you and your family, and we would encourage you to reach out to us for more information.

    CVID represents a complex clinical spectrum of disorders, and many patients can do very well with proper care as so much more is being learned. People with these rare, chronic disorders benefit greatly from receiving care from a physician who specializes in and has dedicated their career to primary immunodeficiency diseases. One such institution and group of specialists exist at the University of California, San Francisco, and we would encourage you to seek out resources for your son there as well, if you have not done so already. We would be happy to connect you if you are interested.

    As President & Founder of the Immune Deficiency Foundation, I know the challenges and stress involved in being the parent of a zebra. My adult son was diagnosed with a primary immunodeficiency when he was a baby. He is doing well today with a family of his own.

    Aaron, please feel free to reach out to me at 410-321-6647 or by email at president@primaryimmune.org. We also have a wealth of information on our website at http://www.primaryimmune.org, and we will be on the West Coast for our National Conference in Anaheim, CA, June 15-17, 2017. There is a whole herd of zebras in the primary immunodeficiency community, and each has a different story. We wish you the best and are here to help.

    Marcia Boyle
    President & Founder
    Immune Deficiency Foundation

    • Aaron Foppe

      Wow, thank you Marcia! I’ll be in touch!

  • Eleanor Howell

    Aaron, thank you for sharing your grief and how you are dealing with it. Your heartbreak touches me deeply. I am crying as I write this. Maybe because of my own children and how I would feel in the same situation. Maybe my own grief, the grief we all share with you as we read your words, goes into a pool of grief somewhere and somehow gets shared among us and relieved a bit among us. I so appreciate how the present moment becomes your bit of heaven as you lay with your son. I wish those present moments with him could last forever. You have given us a precious lesson, to fully be in the moment, with whatever life presents in the moment. Thank you.

    • Aaron Foppe

      Thank you Eleanor for your kind words, I’m so glad you found value and were moved by my story. It’s interesting how much more we can relate to things like this as parents isn’t it? I’ve often wished so vehemently that I could take the condition on myself and just let my son live a typical childhood like the one I had; let me be the one who is sick! I would give anything to take it away, but since I can’t, I give everything just to mitigate it.

  • cheenju

    “When I am lying with him in the hospital bed, I do everything I can to be with him completely.” – that is THE miracle.

    He is gifted to have you as Dad. In the grand scheme of things, human life is just a drop in the ocean. In my perspective, it is just to have someone love you and care for you that makes this life meaningful. It’s the good old “quality” Vs “quantity”.

    I cannot offer any words of hope or solace – but considering the other unfortunates, isn’t your family’s love for each other is a gift? Just a thought.

    • Aaron Foppe

      Thank you for the kind words cheenju. Love is a gift and the greatest one to be sure. We’re in contact with a few other people across the country that are dealing with this and in a few instances sadly one of the spouses walked away from the family. These men and women aren’t “players” or people that would normally run around and desert their families, but the stress drives them out just as it has driven people away from our family. It’s an act of desperate self preservation more than it is an act being selfish.

      But what keeps my family unit preserved is simply that our love for each other is greater than our pain. For the families that were broken up by this, its very easy for me and anyone to say “shame on you”. But then I can’t be overly judgmental because my wife and I know that the amount of work required to maintain a healthy relationship through something like this is tremendous! In that way we are very blessed in that we are willing to work on each other in addition to working around the clock for the well being of both our children. But like anything else that’s worthwhile in life, it is often difficult.

  • Chandra

    One word..I salute you Aaron..

    • Aaron Foppe

      Thank you Chandra.

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