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!
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…