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Update on Little Dylan (and his leg amputation)


Do you remember several months ago when I posted about a really good friend of mine (Katie) and her little boy Dylan needing a lower leg amputation?


Little Dylan was born with a condition called called Fibular Hemimelia and Congenital Short Femur.  And because of that condition, his left leg is about 30% shorter than his right one. (He was born without a fibula in his lower leg and his femur bone is shorter.)  Here he was as a tiny baby.  His foot from his full grown leg is on the left and the foot from the shorter leg is on the right.

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Well that little Dylan grew and grew and was meeting each and every milestone, except having full use of his left leg.  So his parents, Katie and Bryson, after talking to many doctors and then giving it much thought and many (many!) prayers, decided to amputate his left foot.  (Every person born with Dylan’s condition has many different factors that influence the decision to amputate or not.  Katie and Bryson had a lot to weigh before deciding to amputate…..and are now so glad that they did!)



I hosted a little pattern shop sale on my site right before Dylan went into surgery and every penny went to a little leg saving fund for Dylan’s Prosthetic Fund.  Because, yes, this little guy will need many many legs as he grows into adulthood.  The response was awesome.  And really inspiring.  Yeah, you ambitious sewists received a discounted pattern or two but so many of you rallied together to help out little Dylan.  Some of you didn’t even know how to sew but purchased patterns anyway.  And I don’t think I ever posted about how much was raised for Dylan.  (Did I?)  In case I didn’t, a whole lot of $3 sale patterns were purchased to donate over $3,000 to Dylan and his family.  I know, I couldn’t believe it either! :)  I kept checking sales every hour for every day the fund-raiser was open, and I was shocked as the numbers kept rising.  There are so many big hearts out there!


And in case any of you are interested in details, I delivered the check personally (because after moving here to Colorado, I now only live about an hour from my sweet friend Katie) and Katie and Bryson (Dylan’s parents) were speechless.  There were many thanks and many tears that afternoon, and they said again and again how they couldn’t believe how many people purchased patterns, knowing every penny was going to Dylan.  And I could never really put into words how much love Dylan’s family felt that day.  It was very touching.  So thank you again.

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Anyway, I get asked pretty often how little Dylan is doing.  He is doing GREAT! 

(Katie writes a blog all about Dylan, so check in as often as you want!) 


His surgery back in January went well but of course recovery is never any fun.

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However, the day he got home (even though we was achy and uncomfortable) he was playing and trying to get around like he used to.  Katie and Bryson were so impressed with how determined he was to move around with his clunky cast on.  And yeah, maybe he used it a time or two to out-muscle his big brother. ;) 


But he had to keep the cast on for several weeks while his bone and stump healed.

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Soon, it was time to take off the cast.  And Dylan began to get used to his NEW lucky leg!



If someone would ask where his stump was, he’d go in and look for it.

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He quickly realized that his new leg was really helpful in getting out of tight spaces.  Ha.

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But soon it was time to be fitted for his first prosthetic leg.  And he loved his little leg right away.

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And what’s cool, is that little kids are so able.  He learned lightening fast how to crawl around and then walk on his new leg, and to just enjoy being a kid.  And has even been able to squish those toes (real and prosthetic) in the beachy sand.



And well, sometimes his little leg falls off. But everyone has a quick laugh and puts that little leg back on.  (And Katie told me they’d laugh extra hard while wondering what others were thinking if they overheard them say things like, “oops, Dylan’s leg fell off!” or “don’t forget to bring Dylan’s leg!”  Yeah, funny!)




But like expected, Dylan has outgrown his 1st prosthetic leg.  So Dylan is now on his 2nd one.  Which fits better, walks better, stays on a little better, and is taller for his growing body.

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Dylan’s doctors and therapists have been so impressed with his growth and ability.  It’s just so impressive to see little Dylan adapt and excel.  What a cool thing to watch.



And thanks again to everyone here helping ease the cost of buying new legs every 6 months or so as this kiddo grows like a weed. So, as you can see, little Dylan is doing great.  Thank you so much for asking! :)



And just so you know, Oscar Pistorius (the South African who ran in the olympics……and was born with the same condition as Dylan, but in both legs) is the biggest hero in Dylan’s home. 




Dylan doesn’t ever have to feel like he’s at a disadvantage.  Because, even with his NEW LUCKY LEG, he will grow to do really great things.  Gosh, I love that kid! 

 (Remember, you can follow right along with Dylan on his blog, Just Keep Swimming.)



Thanks for inspiring many, little Dylan!




UPDATE:  A few of you have asked (in comments and emails to me) if there was a way to still donate.  Wow.  And sure!  Katie and Bryson are some of the most humble people I know and would never ask for anything.  So the thought of some of you thinking of them and offering some of your heart to them, makes them feel so loved.  You have no idea.  I kinda helped convince Katie and Bryson to set up a Paypal account back in January for those who were asking if they could just send over money, rather than buy patterns.  The fund is called “Dylan’s Lucky Leg Fund”.  Cute right? The fund is still open.  He will have years and years of new prosthetic legs, leg fittings, doctors appts, trips to specialists, etc……so this fund will always be saved for him.   For those of you who were asking and are interested, just click on the “Donate” button below.


Update on little dylan (and his leg amputation)
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Really, thank you again. :)


Ashley Johnston
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Ashley Johnston

Owner at Make It & Love It
Ashley Johnston is a professional DIY costume maker, sewist, crafter, and owner of Make It & Love It. She is a mom of 5 and a wife to a very patient (with my craft clutter) husband. In case you’re wondering, she always chooses crafting/sewing/designing over mopping/dusting/wiping base boards……but bathrooms/laundry/full bellies are always attended to. Whew!
Update on little dylan (and his leg amputation)
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  1. Anonymous says:

    My son was born with the same thing n will b getting his right foot amputated tomorrow this story really helped alot…Thanks!!!

  2. Adali says:

    Hi your story gives me so much hope for my daughter she’s 2 months old and she has the same thing as Dylan. My question is did they give you any other options on Dylan’s leg. I’m not sure where to start with my daughter I didn’t feel confident in the first orthopedic we saw now i want to consult with another how did you know what was right for him and did you feel he was to little to make any decisions like amputee?

  3. Shelley K. says:

    Did you ever make the right decision. As you know, he would be forever hopping around, on crutches or in a wheelchair. Now he can RUN!!!!

    I am just getting off of 8 weeks of crutches and I am here to say that they SUCK! If I had a useless limb, I would amputate too.

  4. Mara says:

    This family will be in my prayers. Lots of blessings and love!!

  5. Elaine says:

    What an amazing story and adorable little boy! My stepdad has a prosthetic leg, and I couldn’t even begin to imagine what he went through as a boy. It’s so amazing to see this little boy’s story. What a supportive family he has!

  6. Dale Garrison says:

    I was born with my Fibula missing in 1956. in 1969 I had an amputation that looks the same as Dylan’s. My doctors waited till I was 12 so I could make my own decision. So for 12 years I wore a brace with built up shoes. At birth I was 1/2 inch shorter and by 12 I was 6 1/2 inch shorter.
    Looks like he has it handled. Seen the rash in one of The pictures. That wont be the last.
    He will do good because at that age it is all he knows, everyone gets up in the morning and put on there leg.


  7. Abbie says:

    I have tears in my eyes. My littlest guy is also named Dylan. And we are a family that has had to endure the heart wrenching ups and downs of pediatric surgery. My heart goes out to your friends, Dylan’s parents, and I am in awe of their courage, strength and faith. Dylan is so very cute and he looks like he is truly thriving. You are such a wonderful, wonderful friend for supporting them so much. Thank you for this inspiration today.

  8. Jessica says:

    Wow, amazing – just amazing! I’m bookmarking this for future donations. Thanks for the opportunity to give. What a precious boy.

  9. Mea says:

    AMAZING!! I laughed a little bit about the leg falling off. You see I can kinda relate but in a different way. Our son had retinoblastoma (cancerous tumor in the eye) and had to have his eye surgically removed. He now has a prosthetic (it looks great!!!) but sometimes it is turned and he looks cockeyed :-) We say the same things….”Oops his eye is turned again!!!” or “Fix your eye!” and we have had a few sideways glances too. LOL. Kids are amazing in their determination and ability to inspire us all with their resilience!!! Hope he adjusts and recovers well.

  10. aussiebushgirl says:

    Dylan, Katie & Bryson have touched our hearts! As an ABA (Aussie born abroad) – in fact, South Africa to be more precise – I am loving that Dylan’s hero is Oscar Pistorius! Go Dylan!!! I am very happily going to wing some money into Dylan’s Lucky Leg Fund just as soon as I’m done here. And Ashley….you rock! Hx

  11. Deb says:

    What an amazing little boy and incredible parents! His story is such an inspiration and brought tears to my eyes. My 6 year old son saw me with tears and asked what was wrong so I showed him the story, he was touched too and got $10.00 from his money box and asked if he could send it to him so he could buy a new leg. So thanks for the PayPal link, our donation was made, it’s only a little, but we sure hope it helps!

  12. Alison says:

    I came across your blog this morning because of a link my sister-in-law posted on my facebook page about the Ruffles and Ridges skirt. (LOVE it, by the way!) I was drawn to link with Dylan’s story and was instantly moved. My heart is filled with joy knowing that his parents are determined to help him be everything God intended for him to be despite the challenges that lie ahead.

    The PayPal account for donations was a great idea and I am thankful to have the chance to donate to this little boy’s future. I also posted a link to this blog post on my business page on facebook. Thank you for your blog and all your great ideas. But mostly, thank you for caring so much about the lives of others.

  13. Elisa says:

    Awe Ash, I totally remember meeting Katie and hanging out with her when you were at work at the Bakery in Rexburg! She was so fun and what an amazing story about her little boy. I enjoyed reading her blog and how she overcame all the trials with his leg. What a special family, we are all blessed and lucky to have you as a friend. :) <3

  14. Melissa says:

    Wow. Such a sweet story and a darling little boy. It’s amazing the attitude we can have in life and the joy that can be found everywhere.

  15. Rachelle Christensen says:

    Wow! So amazing–tears in my eyes! Thanks for sharing this. Katie is lucky to have a friend like you. That Dylan is so sweet and lucky!

  16. Pam Pike says:

    What and amazing precious little boy. I’m so glad to know that he is doing well!

  17. Maren says:

    I love the picture of him in the swing looking back at his leg. What a wonderful example of how we can deal with our adversity with a little bit of humor. Thanks for the update.

  18. Lindy says:

    What a beautiful little boy when I saw the pictures and read my eyes filed up with tears. He is such a brave little boy to have to go through somethings like this. I’m glad he is doing so well. Thank you for posting this.

  19. cucicucicoo says:

    what an incredible and inspiring story! i missed it when you wrote about it before. thank you for sharing about this amazing family! :) lisa

  20. Sara Noemi says:

    What a great story! I’m so glad Dylan can giggle when his prosthetic leg “falls off” =)

  21. Kacie says:

    I remember reading Dylan’s story back in January when you posted about it… moved to tears; aching for the parents and the decision they were faced with. Thank you so much for this update – now I can smile and laugh while I’m crying. What an amazing little boy.

  22. Rhonda K says:

    Thank you for sharing this story. I don’t think I was a follower at the time of your original post. Dylan and his family are an inspiration. I pray that Dylan will have a long, happy, healthy life. God Bless this family.

  23. Gale says:

    Wow! What an inspiration little Dylan is! And such a cutie! I love the swing picture…totally made me giggle! How cool that they can find humor in what most would feel was an unfortunate situation. What a blessing he is to his parents and they are to him. This is one of those life experiences that builds a person’s character and makes them who they are. How lucky that that family has such a supportive friend in you!
    Thanks for sharing this story Ashley!

  24. Marisa says:

    What a great story! Thanks for the update!

  25. Dawn says:

    This is one of the most amazing, inspiring stories I have ever read! I had tears in my eyes, not only for the family, but for the generosity and kindness of yourself and all those who have donated to help Dylan succeed in being a normal boy!!! Kudos to you, and thanks for showing me how much good is out there, and how society can still help out those in need.

  26. Laylabean says:

    Thank you so much for this update! I have been wondering about Dylan and his family. What a sweet little guy!

  27. Erika says:

    It might be my prego hormones, but I’m crying. What an amazing little guy!!

  28. Ashley says:

    I just want to say that little Dylan is precious! I, am an above the knee amputee and have been since the age of 14. I’m now 27 years old. I love that little Dylan is adapting so well! He can accomplish and achieve anything in life!

  29. Kristina Noall says:

    Again, you’re a mind-reader, Ashley! I was JUST thinking yesterday that maybe I would email you, ask about little Dylan, and about how much money you were able to donate to his leg fund. It’s so heartwarming to see the pictures of him adapting and going on with a happy life (especially after seeing the heartWRENCHING pics of the poor little guy after surgery…). Thanks so much for updating us.

  30. Vicki Richardson says:

    I was totally looking for something to inspire me tonight. I really don’t know what I was looking for I was just looking. Then I found (you) Dylan! I am head of heels in love. What an adorable little family. I live in Brighton Colorado and if you ever need something I can help with please just look me up.


  31. Carolyn Staat says:

    I don’t feel I have a right to complain, he shows us all to be thankful for what we have and to get up an get on with life. Thank you Dylan, you inspire me.

  32. Sami says:

    Thanks for the update, what an inspiring story and glad Dylan is doing well and adapting well to his legs.

  33. Brittany says:

    Ashley thank you for sharing Dylan’s story. What an inspiration! I can’t even imagine making that decision and I am so happy that he is thriving! I love that we can share these stories and increase awareness and grow more love for all people.

  34. jackie says:

    At one of my friends’ daughter’s first birthday, there was a little girl there with a cast on her leg and later I asked my friend about it. She said the girl, Anna, was born with some type of defect and they had just gotten Anna’s leg amuputated. She didn’t know what type of birth defect it was but Anna reminded me of Dylan’s story. I am so glad you updated us on his progress.

  35. Jessica says:

    This brought tears to my eyes. Thanks for letting us in on what is going on with him.

  36. Sarah Greenfield says:

    Hi Ashley, thanks for the updates- glad to hear he’s doing great !!

  37. Diana says:

    My son is two and I felt just as Mallory (above) described. Watching Dylan do all these things my little guy is doing and he has this extra hurdle. What an awesome, beautiful little boy!

    Happy to read the update!

  38. Rachael says:

    Golly, he’s cute. What a handsome little man! He’s not much older than my youngest boy. Thank you for the update. His story makes me want to cry and laugh all at the same time. I’m glad the surgery was a success and that he’s flourishing! What a stud! :)

  39. Mallory Nikolaus says:

    Oh my word! I have two little boys, 2 and 3 and I am just overwhelmed with emotion reading this post. I laughed and cried and couldn’t help but donate to sweet little Dylan’s Lucky Leg fund! Thanks for updating and I hope you will continue to do so ever so often.

    xoxo, Mallory @ Classy Clutter

  40. Crystal says:

    What an adorable little boy Dylan is! I can’t imagine having to go through something like that with a child or as a child. He looks so happy. How inspiring!

  41. Karianna says:

    What a cutie! How resilient and strong he is. He’ll go far!

  42. dannyscotland says:

    It just makes me cry to see how great he’s doing and to think about how incredibly hard it must have been for his parents to make such a hard decision. I don’t know how they did it, but thank goodness Dylan is doing so well! I am so happy and thank you so much for posting about how he’s doing.

  43. SuzK says:

    I have a friend whose son’s arm didn’t develop below the elbow. I smiled when I read about “don’t forget Dylan’s leg…” they went thru similar things with Jake’s arm. It was all treated matter-of-factly and he didn’t hesitate to try anything – he played baseball, learned to type, nothing stopped him. Ultimately he rarely used his prothetic, he found what he felt were better ways to do things. He now has his Masters in sports physical therapy and a very succesful career. I think a lot of it is about attitude. He parents never treated him any different from the other kids in the family and as a result no one else did either. He assumed he could figure anything out if he wanted to do it, and he did. Dylan and his family seem to have that same attitude.

  44. sebby says:

    I wish I had seen your previous post, my nephew has the same condition almost exactly and they went the other way (surgical lengthenings) and were able to save his leg. He is nine years old now and through several lengthening and reconstructive surgeries with Dr Standard in MD, he has two legs that are even!!! It’s nothing short of a miracle to me!
    Having said that, Dylan seems to be a beautiful little boy, and I’m sure his parents made a very difficult decision and did what was the best thing for him and their family. There are many extraordinary and inspiring amputees out there and I wish him and his family all the most wonderful things!
    I hope it’s OK, but I’d love to leave a link for anyone who is facing this decision and it’s not an easy one, please check this out to get more info about Dr Standard, his organization and FH in general:
    Thanks so much for such an inspiring story!!

  45. Michelle says:

    Thats.Just.Awesome. :) I think my favorite “Oscar” moment of the Olympics was him talking about growing up and his mother told him ‘Just like your brother puts on his shoes in the morning, you put on your legs in the morning’ (paraphrasing, I can’t remember exact words) and that was the that. Such a great mentality that raised a very capable and certainly not disabled guy!

  46. Lacey Hillman says:

    Wow! i am so touched by this sweet little spirit Dylan. Thank you for sharing . He will always be in my thoughts.

  47. anh says:

    what an inspiration. go dylan! thanks for sharing!

  48. Emilie says:

    What a sweet boy! I was so inspired today by this story and by the human spirit and its desire to thrive!
    Also, the swing picture made me smile. SO cute!

  49. Katie @ Little Becky Homecky says:

    Thanks for sharing the update! What a handsome little boy and a wonderful family! ;)

  50. Ashley says:

    What an inspiring story and what amazing example this family is! Thank you for sharing!

  51. Shirley Clark says:

    I guess I somehow missed this story. What an amazing little guy! I’m so glad he’s doing so good. We saw one of the Secret Millionaire shows a few weeks ago that featured a place in Oklahoma that helped people pay for prosthetic parts. It was just awesome, and something I will definitely think about donating to in the future.

  52. Jennifer says:

    What a wonderful post! I wish the world for Dylan!

  53. Mindy says:

    amazing the reach that blogging has. He is so handsome and I’m proud of him, without ever knowing him! Love the swing picture/commentary, totally made me laugh!

  54. Biana says:

    with friends like you everything possible;)

  55. Erin's Creative Energy says:

    Dylan is so amazing! I loved watching Oscar Pistorius in the Olympics. What a great role model to look up to while growing up. Thanks for posting the update.

  56. Lesley says:

    Ashley, do they have a fund we can donate to? I somehow missed the first round with the pattern and I’d love to donate. I just spent a few minutes looking at Dylan’s blog and you can’t help but fall in love with that little guy.

    1. Ashley says:

      Wow, Leslie, how sweet of you. Really. :) There are a few others who have emailed me and asked the same thing, so I went ahead and added a Paypal Donate button at the end of the post today. It is the same fund that they opened back in January titled, “Dylan’s Lucky Leg Fund”. Thanks again! :)


    2. Lesley says:

      Thanks for making that so easy. Done! I just love PayPal.


  57. Wilson Family Adventures says:

    When I first started reading this post, Oscar Pistorius was the story that came to mind, even before I got to that part of the post mentioning him. As long as Dylan’s parents look at his condition the same as Oscar’s, he will definitely go really far in life.

  58. aliyah says:

    This story is so inspiring! And how sweet of you to help out with donations. I love it.

  59. palak says:

    What a wonderful kid! He *does* look like he’s a pro with his prosthetic!

  60. Miss Angie says:

    That is amazing. What a fantastic little kid-not letting that get in the way of growing up and being him at all. He looks like he’s walking like a pro with the prosthetic. He’s so cute!

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Hi, I’m Ashley—the DIY-enthusiast behind this crazy blog!

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