Why am I doing this?

This blog is about Seth. It’s about his journey from birth to today and into the future. It’s about his illness (Sever Combined Immuno Deficiency) and the journey he is on battling this genetic illness. Seth is an amazingly positive boy, always smiling and takes everything in his stride as i hope you can see from the pictures and videos on this blog. I am his mother, and writing this for other families going through bone marrow transplant or who are dealing with a child with an immune deficiency. But the main reason I started this blog is because over the years more and more people have become interested in our son. There are questions that people have that they don’t want to ask for fear of offending or causing upset. This is my way of answering those questions without, hopefully, any awkwardness! This blog keeps everyone up to date with his progress. It helps people understand exactly whats going on, rather than me feeling like i have to dim down the reality. You can come her and read what you want, ignore what you think you don’t need to know. If you have a question – ask away. Really nothing bothers us. We are also using this blog to show Seth the huge support he has across the world and on 27th March 2015 are asking you all to post a pic of you wearing yellow to facebook, instagram or twitter with the #wearyellowforseth and #scid to spread awareness of this illness. We will be showing Seth the pictures, printing some off (especially the funniest or most inventive), and plotting the location of the pictures on his world map that we have in his hospital room.

People may think we’re a bit casual about this serious life threatening illness that our son has. We are most certainly not. But I’m someone who chooses my battles and puts my emotions and energy into things I can do. Like being there for him, raising him to be a good person as once he’s through all this he will become an adult and he will need to function in society, making choices based on facts and information instead of fear and emotion, and making his life an experience! We can’t do anything about our boy having this illness, but I can give him the best chance of beating it.

342 thoughts on “Why am I doing this?

  1. Jaclyn Musick says:

    Hi! I saw Seth’s video on facebook and it truly touched my heart. I may not know exactly what he’s going through, but I’ve recently been in and out of the hospital these past couple months due to Stage 2 Chronic Kidney Disease. At 17, this is very rare for my age to be having kidney stones. Although I have both my kidneys, my left one does not function. I’m not trying to make this post about me at all, I just want Seth to know that he is not alone. I’m so happy that his dad will be his doner and I will be honored to wear yellow for him. Sending love and prayers to Seth and the rest of your family.

    Liked by 1 person

    • Kelsey says:

      Hi
      I just watched Seths video and think he is the most incredible little man. His smile is infectious! Just want to send that superstar some love. I will be making sure I wear yellow on his special day
      Can’t wait to see all the pics of his face when he sees how loved around the word he truely is!

      Like

    • Dorinda says:

      Hi I am praying that all goes ok for Seth and for the family. I will wear yellow in support of Seth and have my kids wear it also!!! 🙂

      Like

  2. ARIANE says:

    Hey! I just saw Seth’s video and read your story. Seth truly is a little hero and I’d love to show a little support by wearing yellow 🙂 It’s a great idea to show him -in his isolated sitation- that people all around the world think of him and are wishing the best.

    Lots of love from Germany

    Like

  3. Anji Lebdeh says:

    just read about this and it brought tears to my eyes i might not get the chance to meet Seth but i shared his story to my fb account. i may not have yellow clothes but i will think about something i just want to tell the momy of Seth to stay strong because i know how painful it is to see your little boy sick. sending all the love to you Seth from Lebanon

    Like

  4. Ellyn says:

    You have such a beautiful boy! I just came across the video on Facebook, and it was absolutely beautiful, I fell in love with him immediately. I really do hope everything goes well for him and your family. He looks like such a bright spirit and I love the way you are so honest about his situation. It’s inspiring and offers such good information. Again, he is such a beautiful boy. Lots of love, I will most definitely be wearing yellow in support of the little man!

    Like

  5. Janae heys says:

    Hi, i was wondering if it would be okay if i got my school to do a fundraising day (mullumbimby high school, australia) and how we’d get the money to you if we did, i’m currently already organising it because i know how it feels to have a loved one sick and bills piling up, so here is a friendly message, please email me back at 1.2jannyfannycrew@gmail.com ( excuse my email)

    Like

  6. Delwen B says:

    Hey there guys!

    I saw your video on Facebook and quickly hopped onto the internet and read your beautiful blog and I just wanted to say that you all are amazingly strong especially you Seth!!

    On the 27th March, I will definitely wear something yellow and I hope I can get my little sister who is 4 to join in! Look out for us 🙂

    Does Seth have his own Instagram account?

    Love Delwen from Australia xo

    Like

  7. Aisha says:

    Hello! I’m from the Dubai and I was wondering if you guys have instagram, since I don’t have face book or twitter, but I would really love to support Seth on March 27th. Seth is such a little cutie and the video was absolutely adorable!

    – Aisha from Dubai, UAE!

    Like

  8. Christopher says:

    I’m so sorry to hear what your poor child is experiencing. No child should have to experience such a horrible thing. I truly wish you all the best and I hope that the next transplant is successful.

    You are a wonderful mother!

    Like

  9. Letitia Mikkelsen says:

    I watched Seths video today that was on Facebook and it truly touched melt heart. He is such an amazing little man and he has a heart of gold. You must be such a proud mother, he looks like he doesn’t take a day for granted, that’s for sure. I am in grade 12 in my last year of schooling (qld) and I am going to do all I can to spread Seths story to people and to spread the word of yellow. I will definitely be wearing yellow myself too.
    Finally, I would like to say that my deepest wishes are with Seth and your family, he is truly a angel. I hope for the best, and to let you know that you have thousands of people behind you x

    Like

  10. Daisy says:

    First off I want to say HI SETH!! He’s such a happy little boy, even given his condition.

    This hits close to home for me. My little brother has/had SCID. (I don’t know, do they ever really get cured?) He was diagnosed back in 1991 when he was approx 10 months old. Back then they obviously didn’t know too much about SCID and it took months before we even got a diagnosis. I was 6. I didn’t understand what was going on or why my mom was dropping me off at grandma’s to stay while she stayed with Justin at the university hospital in Ulm, Germany. My dad is in the US Army and was overseas in Saudi Arabia at the time. Justin had all the chemo treatments and the only donor that matched enough was my mom. He was in the hospital for over a year and during that time I wasn’t allowed to interact with him physically at all. I got to see him a handful of times through the glass door of the ward. I think it’s amazing that Seth actually gets to see his brother! They told my mom back then that we would be lucky if he saw his 1st birthday. Then they said the same about his 2nd, 5th, and 10th birthday. Long story short, my brother will be 26 this year. 🙂 He has ongoing medical issues that he will most likely carry with him for the rest of his life. BUT he graduated high school, has a job, a long time girlfriend, and is overall a happy guy.

    I wish Seth all the best!! And would love for him (and you) to know that you’re not alone out there!
    Hugs from the United States!

    Like

  11. Nicole says:

    Hi, I don’t know if you’ll get to read this so I’ll go on and post it on your facebook page too. I’m sure you get a lot of emails regarding suggestions for supplements, new drugs etc.
    I’ll just share that in the beginning of 2010, my mom was sick with non-Hodgkins lymphoma and after one cycle of chemo her body couldn’t take another (she was supposed to do 8) so we decided to go alternative. One of the therapies our doctor prescribed was an IMMUNOMODULATOR called LENTIN BIOBRAN 1000. It’s manufactured by Daiwa in Japan and is completely natural. It’s an immunomodulator and so that means if you have a weak immune system it helps it get stronger, which was the case for my mother (she had to take 9 sachets a day), and if you have an over-active immune system, or an auto-immune disease, it helps bring equilibrium. By November of 2010 her scans were clear of the 17cm tumor that she had.
    If you google Lentin Biobran, you’ll see that it’s used mainly for the treatment of cancer as a substitute or a complementary therapy to chemo since chemo severely damages the immune system. I just wanted to share this with you on the chance that you might not have heard of it, and on the chance that it could help. I know it helped my mom. With prayers and the right treatment, she’s healed. I have a one-year old boy. Our family will be wearing yellow for Seth on the 27th, and will be praying for you.

    Like

    • LJLane says:

      Thank you Juliane. Seth can receive presents at: Seth Lane, Ward 3, Great North Children’s hospital, Royal Victoria Infirmary, Newcastle upon Tyne, England, NE1 4LP

      Like

  12. Jason says:

    Hey
    My name is Jason I’m 19 from Australia I saw Seths story on Facebook and it really touched me.
    I just want you to know Seth is my hero and I will be wearing yellow on the 27th n be spreading the word about it 😊
    Your a beautiful family and all so strong .
    Lots of love from Australia

    Like

  13. Patricia Galang says:

    Will be wearing yellow for the little cutie! Sending my love all the way from the Philippines! Stay strong, little man! ❤

    Like

  14. Loni Kohlmyer says:

    Hi
    My name is Loni and I saw Seth’s video on Facebook !! its the sweetest ever and I will definitely be supporting him on the 27th with yellow. He is some kind of wonderful and was wondering if you were able to find a donor for his transplant??? my sister went through very similar situations with leukemia. Being positive is the only way to go…..

    Like

  15. Kayla Rosanelli says:

    My prayers are coming your way! Also, I am a registered bone marrow donor. I don’t know if I would be a match or not, or how the whole process works, but if I was a match, I would be more than willing to provide for Seth! ❤

    Like

  16. Ana says:

    I just saw Seth’s video on Facebook! I instantly fell love for him. I understand you are not collecting for his medical expenses, but I am sure there are many of us that would like to send something for Seth and for Mommy and Daddy. What hospital can we send something to him? Does he still love paw patrol and the Ninja’s. Spreading the word on wear yellow for Seth!

    Like

    • LJLane says:

      You can send things to Seth at : Seth Lane, ward 3, Great North Children’s Hospital, Royal Victoria Infirmary, Newcastle upon Tyne, England,NE1 4LP. It’s very kind however a picture in yellow is all were asking for.

      Like

  17. Jack Peschel-Tenzer says:

    As a 20 year old father i could not imagin the stress that all of you and your family are dealing with. It warms my heart to see how seth is doing i will be wearing yellow on his big day.

    I just got back from a 7 month deployment and can’t believe what seth is going through he truely is one of the bravest heroes out there.

    Like

      • LJLane says:

        We’re hoping at the end of April. He has to have a few operations before then so it will depend on his recovery. we will only know for certain 8 days before. But I will keep everyone updated on here! I promise!

        Like

      • ace says:

        btw im from the philippines and i will support seth i pray for him everyday and i have spread the word about march 27 may god bless you and seth. please say hi to seth for me

        Like

      • ace says:

        I will pray for his successful operation and for his transplant. i couldnt stop crying when i saw the video and i kept watching it over and over i just wish i could go there give him a hug 🙂 anyways stay strong and always remember that God is here for seth and your family

        Like

  18. MRD says:

    Hey, I just saw Seth’s video and I was crying, not of sadness but because I couldnt believe how strong this little boy is. I hope everything goes perfect and Ill be sure to wear yellow on the 27th. Lots of love from the Dominican Republic. ❤

    Like

  19. Vasa says:

    Your little boy is amazing and an inspiration to us all! His strength and joy for life is beautiful! He is angel! Thank you for sharing him with us. We will all be wearing yellow for Seth!! God bless you and your family!

    Like

  20. Claudia says:

    Hi! I just saw Seth’s video and it really touched me. I am from New York, I am 21 years old and have an immune deficiency as well. It has only been two years since my diagnosis and has certainly not been easy, but I know that I and my family have learned so much throughout these years, especially how lucky we are to have so many amazing people in our life always sending their love and support. I send all my prayers and love to Seth and your family! Can’t wait to wear yellow on the 27th! xx

    Like

    • LJLane says:

      Hello. You can ass your name to the bone marrow registry. I’m not sure what that would be for your country but you can google it. Seth has a donor- his dad. But there are always people in need. Thank you for your kindness

      Like

  21. Elizabeth says:

    Hi! My name is Elizabeth Quernemoen and I hail from Rochester, Minnesota in the US. I just want to take a moment and say that I’m praying for Seth as he is going through this very difficult journey. I think it’s absolutely awesome that the Wear Yellow For Seth has become viral and I have been spreading the word!

    When I watched your video of sad, it’s really struck a chord with me. He reminds me a lot of my son and my nephews and just really has touched me. I work for Mayo Clinic in Rochester Minnesota and I type medical dictation as my job. When I type about children who are afflicted with diseases such as Seth’s, I almost become part of the story and feel so privileged and honored to type their documentation because what they’re going through is just so difficult and hard to fathom. So when I saw Seth’s video, I thought to myself what an absolutely amazing little guy and I really admire this blog and the efforts that you put forth to him to make him smile. Can’t wait until March 27!

    Like

  22. Elizabeth says:

    Hi! My name is Elizabeth Quernemoen and I hail from Rochester, Minnesota in the US. I just want to take a moment and say that I’m praying for Seth as he is going through this very difficult journey. I think it’s absolutely awesome that the Wear Yellow For Seth has become viral and I have been spreading the word!

    When I watched your video of Serh, it really struck a chord with me. He reminds me a lot of my son and my nephews and just really has touched me. I work for Mayo Clinic in Rochester Minnesota and I type medical dictation as my job. When I type about children who are afflicted with diseases such as Seth’s, I almost become part of the story and feel so privileged and honored to type their documentation because what they’re going through is just so difficult and hard to fathom. So when I saw Seth’s video, I thought to myself what an absolutely amazing little guy and I really admire this blog and the efforts that you put forth to him to make him smile. Can’t wait until March 27!

    Like

  23. Elizabeth says:

    Hi! My name is Elizabeth Quernemoen and I hail from Rochester, Minnesota in the US. I just want to take a moment and say that I’m praying for Seth as he is going through this very difficult journey. I think it’s absolutely awesome that the Wear Yellow For Seth has become viral and I have been spreading the word!

    When I watched your video of Seth, it really struck a chord with me. He reminds me a lot of my son and my nephews and just really has touched me. I work for Mayo Clinic in Rochester Minnesota and I type medical dictation as my job. When I type about children who are afflicted with diseases such as Seth’s, I almost become part of the story and feel so privileged and honored to type their documentation because what they’re going through is just so difficult and hard to fathom. So when I saw Seth’s video, I thought to myself what an absolutely amazing little guy and I really admire this blog and the efforts that you put forth to him to make him smile. Can’t wait until March 27!

    Like

  24. Gürkan says:

    Hi Seth,
    My young friend, I shared your video with some of my friends and family and all together will wear yellow for you. Our young hero, I am sure that you will be well soon and your mother will be exhausted from cleaning your yellow tshirts 🙂
    Lots of love from Turkey

    Like

  25. Kayt says:

    I am praying for Seth. Know that God is with him and you all as he fights to get well soon. Remember Philippians 4:13, I can do all things through Christ who strengthens me. Praise God for dad being able to donate. Again, continued prayers to you all from Arkansas, USA!

    Like

  26. Cynthia says:

    Hi Seth — I just wanted to let you know that my youngest son Danny (now 26) showed me your video this morning. He was more than touched by your message and your spirit. We are praying for you and your family …. and we want you to know that we will definitely show our support on the 27th!!!! Hugs and many smiles from Yonkers, New York, U.S.A. 🙂 ❤

    Like

  27. Vanessa says:

    This little boy touched my heart such a huge smile and so positive! I’m definitely praying for him and his family. Love to see everyone coming together and praying and supporting this baby boy on his journey. If anyone has information on his hospital or a donation sight I would love to send him a bunch of yellow toys and goodies!

    Like

    • LJLane says:

      Hello. Thank you. The family aren’t pursuing donations as Seth’s care is paid for by the national health service in England. He’s receiving so much support its amazing.

      Like

  28. Kim says:

    Hi there Seth.
    I am sorry that I do not own anny yellow clothing, but think that you are so awesome!
    I will be praying for you 🙂

    Like

  29. Sri says:

    Hello- I love what you are doing for your little boy. Trying to make sure he enjoys his time despite the illness needs a lot of strength. As a parent who was running around doctors during my daughter’s 1st year due to various illnesses, there is one thing that kept me going. accepting the facts and being strong. It was hard to not cry when my baby started pednisolone at one month. I will wear Yellow to support your hero and spread the word around. Stay strong!!

    Like

  30. nawal says:

    hi, i don’t find the words to explain how much im touched by the video that you shared.
    seth is such an angel and a real hero.
    in life i hate the yelow and i have no clothes in this color, but for this little angel i will buy a yellow t-shirt, to send to him a photo of mine and i’ll wrhite i love u seth in french, from the bottom of my heart i wish that he will be better.
    i pray for him
    nawal, Belgium

    Like

  31. joshua says:

    Hello, Seth. Just wanted to say you are an awesome little fellow and a great inspiration to everyone fighting against diseases. Just a question. How does one know if he/she is a compatible match for a bone marrow transplant?

    Like

  32. Anastazia says:

    Hi! I am a preschool teacher from Connecticut and I heard about Seth this morning on our local radio station. The second I was able I looked up his video and then this website and was so moved by his story.
    Next Friday I will be wearing yellow and I will encourage all of the children and families, not only in my class, but in my entire school (almost 120 children!) to show their support as well. My thoughts are with Seth and your whole family, keep strong and stay positive!

    One question (and if this is too personal, I understand), where are you from? I’m hoping to share a little bit about Seth when I talk with my students about wearing yellow.

    Like

  33. Amy says:

    My daughter and I saw this and are going to participate here in Dallas, tx. She is 6 and would like to write Seth. Is there a way we can do this?

    Like

    • LJLane says:

      She can write a letter to him at the hospital. I’m sure he would like that! Seth Lane, Ward 3, Great North Children’s Hospital, Royal Victoria Infirmary, Newcastle Upon Tyne, England, NE1 4LP.

      Like

  34. VirtuousProm says:

    Hello from sunny Arizona!

    We are so excited to wear yellow on March 27! Our entire team (including our puppies) will be rocking yellow in support of your little man! We are so heartbroken that your family has to endure this and we are honored to be part of this effort.

    We would like to do more, though. We would like to donate 50% of all proceeds from yellow dress sales to help support research for Seth’s condition – at least through his second marrow transplant. Which charity should we support?

    Our hearts go out to you and yours.

    Hugs from Arizona,
    The Virtuous Prom Team

    Like

    • LJLane says:

      Hello. That is very kind. Seth is supported by the Bubble Foundation in England. It’s not a well known charity but does amazing work supporting research for bone marrow transplant patients and provides support so that families like ours can stay together. If it wasn’t from them Seth’s mummy and newborn brother would have to stay 4 hours away.

      Like

  35. Rebecca Hyde says:

    I am so excited to wear yellow for little Seth. My kids are going to join in too! My 5 yr old would like to send him some pictures and be a pen pal for him so to speak:-) Would this be okay? Prayers for you all. I would love to stay in touch with you and keep up with Seth’s progress.

    Like

    • LJLane says:

      That’s a really nice idea. I’m she whe would like that. You can write to him at Seth Lane, Ward 3, Great North Children’s Hospital, Royal Victoria Hospital, Newcastle Upon Tyne, England, NE1 4LP

      Liked by 1 person

  36. cajander3 says:

    Hi Seth and family!
    I just watched your video (the one about wearing yellow) and it brought tears to my eyes. Seth’s big captivating brown eyes, his chubby cheeks (just like my little boy used to have) and that sweet, sweet smile, oh that smile, made me melt! What a precious little man he is! You can count on me to wear yellow on the 27th, will post my picture and I plan on getting lots of others to do the same. I will be thinking of you often and holding you dear in my heart. Thank you for sharing your story!
    Lots of love and hugs to you! ♡
    Cara

    Like

  37. Jade says:

    Firstly,Hi Seth
    I saw your video on Facebook and it just brought me to tears! I go on holiday on the 27th I have made sure that I have found a yellow top to wear when I goto the airport! I have made everyone else in my family wears a yellow top! I also wanted to say you in your photos on here are incredible you look so happy in them I hope you get better!

    Like

  38. Carol Riffle says:

    Hi Seth! I invited 230 friends on my Facebook page to wear yellow and also I am calling my son’s school tomorrow and ask if they can do a WEAR YELLOW FOR SETH day on March 27th and post the pictures of the kids wearing yellow to show how much they care and how much I care, my son wants to do this, he said awww he’s so cute, he will be 13 in June. I also did some editing on some pictures for you I’ve posted them on my page on facebook.

    Like

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