Personal update: meet the maker

Wilma Westenberg is a crochet designer and shares free crochet patterns

Hi all,

Today I want to share something very personal I have never really talked about before. Not that it’s a secret or anything; I just didn’t really have a reason to share my story. In this blog post you can meet the maker behind wilmade.com! 

Born with a tumor

I was born with a malignant tumor in my face. For more than 22 years doctors did not know what it was exactly. They had never seen it before and said I was the only one in the world as far as they knew.

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I have had surgeries when I was younger but the tumor came back immediately. There is nothing they can do. I’ve had a rough childhood with the tumor growing faster as I got older, but against all odds the last 6 years the growth has been stable. The future remains a big question mark.

Getting diagnosed

Less than a year ago (2017) I did a second opinion. Against all my expectations this new team was able to give me a diagnosis: Facial Infiltrating Lipomatosis, an ultra rare condition with worldwide only a handful of people affected. But still, this meant I wasn’t alone anymore after 22 years!

I immediately started searching online for other people with this rare condition. So far I have found 20 people in the whole wide world. We stay connected through Facebook and share pictures and experiences. It’s amazing how many similarities we have and how much we look alike. I consider them as my new ‘extended family’. Coming years I want to travel around the world to meet many of my new extended family.

Join me on my journey

My life is changing so fast (in a positive way) and it’s all so exciting! All these life changing events also have an impact on my crochet journey, which I will update you on soon!

> Edit: read my update here

Love,
Wilma

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29 Comments

  • Reply
    Karen Roth
    26 July 2018 at 1:04 pm

    I love your artistry! Not only in the designs, but for your heart. You are so sweet and gorgeous! But I totally believe that you are a blessing to the ones who know you. Keeping you in my prayers .

  • Reply
    Teresa
    21 June 2018 at 8:33 pm

    Hi: I substituted at a local Christian school in my area. We had a young boy name Hick who had a similar facial growth. He has already had multiple surgeries but nothing much else could be done. He’s a Happy child

    • Reply
      Wilma
      21 June 2018 at 8:35 pm

      Hi Teresa! Thank you for your reply. Do you maybe know if the boy was born with it, or did it grow later in life? If you happen to know his parents, would it be possible to send them my page or my email address (wilmawestenberg@gmail.com) and ask if they want to reach out to me? I would love to get in touch with them! Hugs from Holland

    • Reply
      Teresa
      21 June 2018 at 8:35 pm

      His name is Huck. Not hick spell check changed my original spelling.

  • Reply
    Barbara York
    18 June 2018 at 4:38 am

    Hi, my name is Barbara and I live in Amarillo, Texas in the USA. 2 yrs ago my niece had a baby who was born with Harlequin Ichthyosis. She was one of a handful of children living with this diagnosis and thru searching on the internet she has been able to meet quite a few of the mothers who have children with this disease. One has written a book that I think will help you in your journey. It is called ” A Different Beautiful” by Courtney Westlake.

  • Reply
    Tam Johnson
    9 June 2018 at 9:35 am

    So many folks here have said everything I could say, but I just wanted to jump in and say it too because I can’t help myself! You are a rare and beautiful flower, a true gift in this world, especially for the courage and compassion you show.

    Very few would be strong enough to overcome their fear of rejection and put themselves out there this way, and I know what it takes to be that brave. I honour you. I pray that your light shines into a darkness that the world hasn’t even really discovered yet (and we thought we knew it all right?!) and gives your extended family the strength and confidence to shine bright as well.

    I adore crochet and your patterns are amazing. I’m astounded everyday at the joy, love and connection the sharing of crochet brings to the world, and hope to do a lot more of that myself! Thank you for being so generous, so brave and the fullness of who you are.

    Namaste
    Tam x x

    • Reply
      Wilma
      13 June 2018 at 1:26 pm

      Thank you so much Tam, really appreciate your supportive words. Made me smile <3 Sending you hugs from Holland!

  • Reply
    Nevin McCarthy
    26 May 2018 at 9:03 am

    Hi Wilma. You are a beautiful woman. I am loving this post and will try my (not so practical) hands at this. I will watch the tutorial over and over again until I get it. Thanks for this and best wishes from Ireland. Nevin

    • Reply
      Wilma
      26 May 2018 at 2:52 pm

      Thank you so much for your kind words, really appreciate it <3 I'm sure you can do it, it looks harder than it really is! 🙂 x

  • Reply
    Janice Maiolatesi
    25 May 2018 at 1:39 pm

    Thank you for brave story. It gives inspiration & reaches so many people. I love your blog and all your crafts, but look forward to more stories about your life as you. Blessing on you and stay well. I am looking forward to your your new series coming out:)

    • Reply
      Wilma
      26 May 2018 at 10:22 pm

      Thank you so much for your kind words Janice, really appreciate it 🙂

  • Reply
    Cheryl
    24 May 2018 at 9:02 am

    LOVE YOUR ITEMS, AND YOUR ATTITUDE, STAY STRONG. GOD made you perfect in his eyes, and that is all that matters. Sorry for your struggles.
    Your work is beautiful.

    • Reply
      Wilma
      26 May 2018 at 10:26 pm

      Thank you so much dear Cheryl, really appreciate it!

  • Reply
    Carole
    23 May 2018 at 1:40 pm

    I just love your patterns. I saved the Ana and Pom pom shawls and I’ll wait for that special yarn I will find. You are a lovely young lady. and very brave and strong to share your story. I wish you all the best in the world and I will pray for your health and happiness. I am a retired primary teacher from Buffalo, NY, USA, and I teach crochet in a local store and a library where I also work.

    • Reply
      Wilma
      26 May 2018 at 10:30 pm

      Thank you so much Carole, really appreciate your lovely comment! I really love that you teach crochet lessons and spreading the love for crochet! 🙂

  • Reply
    SueBee
    23 May 2018 at 4:40 am

    Thank you for being brave and sharing your story. You’re a beautiful girl (woman) and it’s wonderful you’ve found others with the same conditions and now you have friends around the world- and even more friends with your lovely patterns. I love your Ana Lucia and can’t wait to try and make it.

  • Reply
    Lia
    21 May 2018 at 5:42 am

    You are so talented and brave! Thank you for sharing your story and your beautiful patterns. Last month I made your Bella Vita shawl for charity. It ended up being presented to a 92 year old lady for her birthday who feels she had a “ beautiful life”.

  • Reply
    Kaye
    8 May 2018 at 1:46 am

    Hi Wilma,
    I love your crochet work on the blue circular shawl. I like to crochet very much and it is nice to have a simple one for TV watching and relaxing.
    I will give this one a try, I also wish you health and happiness. You are a brave and lovely young woman.

    • Reply
      Wilma
      11 May 2018 at 11:38 pm

      Thank you so much dear Kaye, really appreciate it <3

  • Reply
    Joyful Josie Shawl - a round crochet shawl by Wilmade
    28 April 2018 at 8:12 pm

    […] > Read more about me > Read more about this special series of patterns > Read more about my meeting with Josie […]

  • Reply
    Misung
    26 April 2018 at 5:04 pm

    Hi Wilma. You are a so beautiful lady. Thank you for sharing your personal story. I really support you and your extended family.

  • Reply
    Caramia
    10 April 2018 at 6:02 pm

    Hi Wilma, I know someone that I have known for, eeewwww more years than I thought and it just shocked me how long… : /
    Anyway, back to the important message. I know someone that has had a tumor on her face at her lower jawline. I would say it showed its self when she was around 19 or so. I believe it is the same thing but I believe it took her like 20+ years to even put a name to it. I think it is the same thing. She is a darling lady. I really never notice that she has this tumor. It is just not what people look for or notice when they are enjoying the company of a wonderful person,.
    I think it is great that you shared. I hope she has found you and that the two of you get to compare and become great friends. I have not talk to or seen this nice lady in like 20 years. Her name is Sandy. I am going to look in on you every once in a while and see if I can put Sandy in touch with you…that is …if you and Sandy have not already come in contact.
    I love your site and and your work is so nice. You are a darling little lady; do not ever be shy !
    I wish you the very best in all that you do and want to do.
    Caramia

    • Reply
      Wilma
      11 April 2018 at 3:47 pm

      Hi Caramia, thank you for your comment! Wow, I’m glad they finally have a name for it after all those years! Many people tell me the same, about noticing it. They say after 5 minutes they don’t notice it anymore 🙂

      I don’t know her, but I would love to get in touch! Does she have Instagram? She can also email me if she prefers. Or I can contact her if she gives her email. Thank you for connecting us! 😀

      X Wilma

  • Reply
    Destiny
    9 April 2018 at 1:10 am

    You’re beautiful! So glad you finally have a diagnoses and are able to connect with your new extended family! ❤️

    • Reply
      Wilma
      10 April 2018 at 3:04 pm

      Thank you so much Destiny <3

  • Reply
    Rhonda
    9 April 2018 at 12:22 am

    Wow sometimes the internet can be such a great thing! So glad your research has brought you a new found confidence and that you can help others, you are gorgeous and thank you for sharing this and free patterns!

    • Reply
      Wilma
      10 April 2018 at 3:04 pm

      Thank you dear Rhonda, really appreciate it <3

  • Reply
    Eva Rothenberg
    8 April 2018 at 6:54 pm

    Hi Wilma ~ thank you for your tutorials. I did the double brim hat. BTW you are beautiful!

    • Reply
      Wilma
      8 April 2018 at 6:55 pm

      Hi Eva, you’re very welcome! Thank you so much for your kind comment, really appreciate it <3

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