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Our Story

As many of you know Iain was diagnosed with Idiopathic Pulmonary Hypertension in 2004 after a regular visit to his pediatrician in Boulder, Jill Kamon. She had identified a loud second heart sound and concerned she referred him to Children's Hospital Colorado where he was diagnosed and ultimately treated by Dr. Ivy's team. Many children do not have that early diagnosis and we cannot thank enough Jill Kamon, Dr. Ivy, Michelle, Beth and so many more as they have given us Iain for the last 12 years. As most of you know those early years were a little on the stressful side as he was on IVFlolan. Later, he transitioned to Remodulin which gave us and him a break as it meant he could be away from us for more than half an hour. All good things come to an end and the therapies ran their course, Iain's health has declined over the last eighteen months and now he is undergoing a life-saving lung transplant at the Children's Hospital in St. Louis. 

We would like to use this forum as a method of communication about Iain's journey.   In the early hours of Tuesday, January 17, 2017 donor lungs became available. We, the entire Hess family thank you for all of your love and support and will update you on the blog page when we can.

Due to the complexity of this type of surgery there are many reasons why Iain will not be able to receive gifts such as flowers, stuffed animals, balloons etc so instead please consider a donation. With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses.

Comments

  • The COTA Staff

    We are happy to be working with you!

  • Steve Van Wormer

    Iain, John and Seema... Marina, Lucas and I have been keeping you in the light and sending you positive vibes since waking up to hear this news. Wishing you strength and health in the days ahead. Look forward to seeing your triumphant return to Camp Del Corizon this year. Grateful to the family who's generous gift will give you a new lease on life. #TeamIain #phaware

  • Seema

    Thank you Marina, Lucas and Steve. I have signed Iain up for Camp del Corlazon. 17 is the last year you can do it, and there is no way he would miss it.

  • Dexy Payne

    Thinking of you guys... keeping in touch with simon is great. High Peaks kids and parents are sending good thoughts.

  • Seema

    Hi Dexy. I know that Simon is missing you guys. Hopefully he can be back in Boulder soon!

  • Elizabeth Burrows

    The Summit community sends hope for a strong recovery, love for Iain and your family, and gratitude to the family who has made this possible for Iain. We are thinking of you!

  • Abraham Family

    Dearest Iain, Seema, John, Simon, and Olivia, You are deeply in our thoughts. May this challenging post-surgical period resolve quickly. Iain, we hope that you recover with strong, positive results. You hold yourself with incredible grace and courage. We ALL miss you here in Boulder. Dean, Colin, Mason, and all your pals certainly can't wait to see you! To all of you, we send love and warmest wishes. Come home soon, Iain. xx The Abrahams Tom, Lari, Dean, Eve, Alexa, and Aengus

  • CKSteele

    Dear Lain and Family, Congratulations on your transplant! I am reading of your struggles so far post and am praying that these issues will soon be resolved and that you will be well on your way to a productive recovery. Once you move past this difficult stage you will be amazed at how well you will finally feel. My son had IPAH and received a heart and double lung transplant at age 14. He is now 17 and doing well. We also used COTA and don't know what we would have done without this organization! Please feel free to contact me if you have any questions or just want to talk to someone who has been through this. I also am admin. to a private FB group for heart and lung transplant patients and their caregivers if you are interested. I will continue waiting for and reading your updates. Sincerely, Colleen Steele

  • Jessica Schmitt

    Dear Iain, Seema, John, Simon, and Olivia, When life gives us situations that cause us to feel so helpless, sometimes all we can do is share our love and let you know that we are thinking of you and praying for you. Iain, all of us at Summit have loved you since you were just a scrawny little sixth grader so full of spunk. We're all rooting for you! Seema and John, I've always been impressed with how strong you both are, but now that I'm a mom I am completely blown away--I don't know how you do it. I pray that you can find strength and hope even though this experience that no parent should have to face. Thank you for sharing updates; you're on our minds constantly. Much love, Jessica Schmitt and everyone at Summit

  • Sara Thompson

    Dear Seema, John, and Iain, I am holding all of you in my thoughts and heart, and want you to know that I am rooting for Iain in this fight! Thank you for sharing with all of us what it means to be a family. With admiration and love, Sara Thompson Summit Middle School

  • Steve.White

    We've been anxiously following Iain's progress these last few days and holding you all in prayer. Your entire PHA family is with you in spirit and rooting for Iain's full recovery. Steve, Andrea, and Aidan White, Williamstown, Massachusetts

  • Michelle Laub

    My thoughts are with your family, day and night. I remember clearly the day we met you, in our we little conference room in the library, Seema and Iain shared your journey with PHA and how we are part of it as Iain's teachers and community. The love, faith, and strength of each of you, as a mom Seema, and as a human being enjoying life Iain, shines extraordinary to me, even today. As I have began my journey in motherhood, your family is a beacon to me. Stay strong, these past few days especially, we are holding you in our hearts, prayers, meditations, and every moment sending hopes of blood clotting. Hugs, Michelle

  • Lindsey Pisano

    Sending you all my thoughts and strength. Love your family and loved watching all this kids grow up through High Peaks. Excited for the next chapter of Iain's life, watch out world here he comes! Mrs. Pisano

  • Jennifer Gendron

    Sending all of our thoughts and prayers your way Iain from Braden and I here in Canada. Thinking of you and your family and wishing you all the best as you go through this journey. We so enjoyed meeting you all in Orlando. Braden celebrated 7 years with his new lungs in September. We are cheering you on from afar!!

  • Lesa

    Iain, You have always been a trailblazer on roads less traveled. Wishing you endurance and strength. Sending up prayers for you and your family, Lesa White

  • EDrozda

    Iain, I am thinking of you, and sending love from the mountains of Colorado. Ms. Drozda-Freeman

  • Dunbar

    Be strong Iain! You're tough!

  • Michelle Laub

    Sending wishes of mountains of strength to you Iain!

  • martieandbobbrocko

    It is so marvelous to see Iain's progress! We have been following along and finally can write to tell you-all that Iain and his family are such brave, strong people. You have been in our thoughts and prayers all along this journey. Best wishes for a continuing success. Martie, Bob, Kathryn, John, Grace and the Pine Needlers too.

  • Betsy

    You all are in our thoughts and prayers. Every achievement Iain makes is wonderful. Hugs to Iain - later - John, Seema and family and Seema's parents. John and Betsy

  • Jill kamon

    That is a beautiful picture. So happy to be able to follow his recovery. Jill

  • Michelle Laub

    There is a Summit heart with Iain's name sitting next to me at my classroom desk, as I am sending up prayers every chance I get. Prayers for the dance between Iain's lungs, heart, kidneys, and everyone supporting him.

  • Donna Majcen

    Thinking and praying for you Iain. You are so strong.

  • Sara Thompson

    I'm thinking of you, Iain, and sending love and strength to you and your family. Your Summit family is holding all of you in our hearts every day.

  • JoAnn Restrepo

    Seema & John Leslie e-mailed us and told us about Iain's transplant. We have since been keeping up with your blogs. You have always been a special family to us and what you are all going through is weighing on our hearts. From the picture you posted of Iain I can see he has grown into a very handsome young man--we haven't seen him since he was about 8yrs old in his wetsuit swimming in your parent's pool, John. We are praying for Iain's recovery and for God to give you both strength, encouragement, peace, rest and the wisdom you need when making decisions concerning Iain's care. Our love to you all, Fabio&JoAnn Restrepo

  • Michelle Laub

    Thinking of you all. The strength and faith you have is relentless! I'm so glad to hear Iain is getting to communicate more and more and just elated that the new lungs are acclimating to their new home and heart!

  • brenda.lombardi

    Dear John & Seema, The Lombardi family are storming heaven for Iain and for you both. We met when we lived in Longmont over 9 years ago (now live in Columbus, OH) and met through Sarah Dormon & Sarah Mitelhaus. Our son Peter with Down syndrome has had many obstacles with open heart surgery at 5 months old and now at 10 years old, is battling leukemia but doing well tolerating the chemotherapy treatments for the past 18 months. During this time and seeing our son suffer has been very difficult however our burden and strength is lifted as we see the out pouring of love, prayers and support from friends and family...and those we hardly knew. So we extend prayers of healing, strength, and the ability to see God grace through this very difficult time. Hope you received the hospital gift card we sent. It was a blessing to have them as we lived at the hospital for many months with Peter. God Bless, Brenda & Matt Lombardi

  • Moira and Vijai

    Iain you are constantly in our thoughts. We wish we were close enough to visit you and see the wonderful progress you are making-keep it up! LOTS of LOVE! Nana and Grandpa

  • Hector Urroz

    Ian, best wishes, hang in there! Hector and Sousan your neighbors in South Meadow.

  • Dunbar Ivy

    I am so happy for Iain to be having a good day!

  • Sara Weatherley

    I have been following your blog regularly. It was so inspirational to read your entry. I can only imagine the smile on everyone's faces as Iain surpassed the expectations for walking today. Truly amazing!

  • Moira Prakash

    Iain we are so so delighted with your progress-not just delighted but -jumping up and down with joy-well I am -Grandpa is grinning with pleasure!!! Keep up the good work and continue to thrill us with your "class acts." We are so very happy for you to have Simon visit you and just wish we were closer.Keep up the good work. Lots of love, Nana and Grandpa

  • Michelle Laub

    Glad tidings from la clase de español! A pretty good Thursday and walking this weekend, yes! Sending hellos and cheers for more. Way to go Iain, you are the bravest person I know!

  • Kirstenfelton

    Hi Hess family from Boulder! What a journey! Thank you for the posts. I read them all and pray for each one of you nightly. Love is all. Kirsten and Tim

  • Jill kamon

    I read entries the minute I see them posted. I am so looking forward to seeing you all when you get home.......what a journey. Jill Kamon

  • Moira and Vijai Prakash

    Iain ,we continue to be so proud of you.To me you are like a young Grecian warrior -absolutely devoted to your cause--which is to make sure all those wonderful doctors and nurses working for you and with you are recognized not only for their medical abilities but for their true friendship,caring and compassion which I believe is the back bone to your successful recovery. Please tell them your Nana and Grandpa think they are" The Bee's Knees" Meanwhile you keep them happy by doing the "Right Thing!" Love Nana and Grandpa.

  • The Abrahams

    Happy to hear that you're on the move, Iain! Sounds like you're energized for the boys' visit. What a fantastic reunion it will be! Thank goodness the constant nausea has subsided. I know that Dean's really excited to see you. How wonderful that the hospital has organized a venue for everyone to gather. They sound like the best bunch a family could hope for. Seema keep the positive news coming! Won't be long now, Iain, until the squad's reunited! Best to all xx The Abrahams

  • Lynn and John Fleming

    Iain, Seema, and John, Iain, you are truly one of the strongest and bravest young men that we know. Apparently, you inherited it from your amazing parents! We can't imagine all that you've been through. Please know that we are thinking of you and your family as you fight to get better soon. Much love to ALL of you! Lynn and John

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