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Someone who makes me smile

My son has a little girl in his year who has crohn’s disease and yesterday she turned 11! She was 9 when she was diagnosed. I knew her Mum to say hello to before this, but since finding out she has crohn’s we’ve become good friends.

Now, this is an extraordinary little girl and her name is Ellie. She’s gorgeous and popular, but is really sick. She can’t seem to get her crohn’s under control and as you can see in the photos she’s in the middle of an enteral nutrition feeding program (this is her 2nd round). So she cannot eat a single thing for 8 weeks – just nutrition shakes through the feeding tube. Her doctor wants to start some more aggressive treatment and this has been a hard decision for her family… About 10 years ago I trialed the drug her doctor wants to put her on (infliximab infusions) and I had great results (even after about 2 days!). But I was 26 years old, not 11. So the decision to take this step has been frightening for her Mum. I tried this drug again about 2 years ago but I had built up a resistance so I couldn’t use it again. So in this decision making process I have been trying to gently guide and help her Mum. But Ellie is so sick and she’s not growing, nor has she hit puberty, so there are no options at the moment other than to use the drug and pray it works. Research suggests it will – which is favourbable…

I’m writing about Ellie today because yesterday was her birthday and she couldn’t have a typical party… she can’t eat so there was no party food or cake! To keep her spirits up her Mum thought of a surprise ‘nerf gun wars‘ party at the park. My boys had been keeping it a secret for a week! Here she is the moment she realised we were all hiding!

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Doesn’t her face say it all? How happy is she?

Ellie would have to be one of the most inspiring children I’ve ever met. Does it look like crohn’s bothers her? Does it look like she has a care in the world? I cried behind my sunglasses when she started screaming and yelling and thanking everyone… She even went to school camp last week with her nutrition shakes (without her Mum!) and did it all herself for 3 days. I saw her when she got off the bus after being away and she was still smiling.

My son has a soft spot for her. He knows some of what she has to deal with. He gets it. I know he looks out for her at school. She said to him at the party “Cruise did you know all day at school about this??” Haha! It was so adorable. I saw their little text messages to each other last night where Cruise said thanks for the cool party and in return she thanked him for the present.

I got in bed last night and sent these photos to Ellie’s Mum and I said to my husband “she’s got me.” He was like “what do you mean?” She has me hook, line and sinker. It’s hard to explain but it’s the fact that she smiles through it all. What else is there left to do but smile? Life’s too grand and wonderful and amazing to be sad about crohn’s disease. I tell her Mum all the time that I think Ellie is doing wonderfully and she has the right support around her. I have a feeling everything will turn out ok.

So I’ll see Ellie again soon and hopefully it will be with round 1 of some new drugs under her belt. I said to her last night “hopefully by Christmas you’ll be brand new!” She laughed and said “oh I hope so!” She was still smiling…

If you have a child with crohn’s who has tried infliximab drop me a line because I know Ellie’s Mum would love to hear from you!

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12 Comments

  1. Reply

    Rachel Moodie via Facebook

    November 1, 2013

    Ellie is stunning, beautiful little snippet Katrina!!! Hope everything works out for her!!

  2. Reply

    Chris R

    November 1, 2013

    This made me cry. What an amazing young girl Ellie is and she is so lucky to have you in her corner. Having had a son go through so many ups and downs and on so many different drugs the last 8 years, I can relate somewhat. My son is doing well at the moment and was never as sick as Ellie is. Having someone to relate to is so important for both Ellie and her mum, Katrina you have such a good heart. Praying that the new drugs work for Ellie and by Christmas she is feeling on top of the world. Just quietly your son is clearly a gem.

  3. Reply

    Jenna Woodall via Facebook

    November 1, 2013

    She is such a beautiful little girl!

  4. Reply

    Jenna Woodall via Facebook

    November 1, 2013

    Lyle Jones – this is your gorgoues girl!

  5. Reply

    Penny

    November 1, 2013

    What a delightful girl…. So very pretty too.
    Laughter is the best medicine…

  6. Reply

    Susan Henshaw via Facebook

    November 1, 2013

    Just a thought, my son has just turned 13 and most of his friends that are girls have only hit puberty between 12 and 13, so she still has plenty of time. Glad to see all her friends supporting her on her brithday, and her mum and her are so lucky to have you as their friend and for support!! You are awesome Katrina Chambers!!

  7. Reply

    Nicole Prior via Facebook

    November 1, 2013

    Thanks for sharing, a inspirational young girl. Wishing her the best 🙂

  8. Reply

    Chrissie

    November 1, 2013

    Oh what a beautiful, inspiring story! That brought me to tears. Thank you for sharing and also thank you to Ellie’s mum for letting her story be shared. Wishing Ellie all the very best with what’s to come…

  9. Reply

    Jude

    November 2, 2013

    Thankyou

  10. Reply

    Siobhan

    November 2, 2013

    Kids are so strong. I wish Ellie all the best. What a lovely birthday surprise!

    My middle fella is still struggling with his tummy issues. 4 years later, still no diagnosis. We are ever grateful it is not Crohns, however some sort of diagnosis would be wonderful. He is 13, tiny, with minimal growth (his 8 year old brother is hot on his heals!) no sign of puberty. It breaks my heart every day to see him so worn out and not wanting, or feeling up to do his beloved breakdancing & free running. We are under the wonderful care of the RCH here in Melbourne, so we live in hope that one day, one of the myriad of tests he has, will show something up that can be treatable, even better, curable.

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