Mackenzie’s story – a parent’s perspective

Our son Mackenzie (Mac) was 12 when he was first diagnosed with Crohn’s Disease on the 8.1.2020. Previously Mac had told me about finding blood in his stool, and that he had been getting stomach cramps ,so we took him to his GP who referred him to Dr Muir, a paediatric gastroenterologist who ordered blood and stool tests. After Dr Muir received the test results, he ordered a colonoscopy and endoscopy for the above date.

Mac, his Dad Trev and I spoke about how Mac was feeling before he went in for checks with the nurse. We assured him that it’s perfectly normal to be afraid and that we would be there when he woke up. I was able to stay with Mac until he was asleep under the anesthetic. Only then would I let the tears flow. What would his life be like if he does have Crohn’s Disease? Will there be a cure? Will he need to have part of his gastrointestinal system removed? Will his friends understand? Will he be bullied? He was going into year seven in a few short weeks, will his teachers be supportive and understand? Will he understand what is happening to him?

Mac is also on the spectrum with what I will call high functioning autism (its not the term I choose to use, however for the sake of Mac’s story and for understanding from the wider community, I will use it this once). Dr Muir spoke to us after it was over and advised us that Mac did indeed have Crohn’s Disease and would have so for the rest of his life. We spoke about the best plans to get into remission as quickly and safely as possible. His calprotectin results were 3500, the normal level is between 0-50….

We started Mac on the liquid shakes which he had for eight weeks. Thankfully his friends and teachers were understanding once they were educated on what Crohn’s is, and they supported him. That was also the year Covid hit. By the end of the year, Mac needed to add fortnightly Humira injections and methotrexate to his medication. That was hard, but the Abbvie nurses helped immensely.

Mac is now 16 and is doing well in Year 11 :). We are so very proud of him and his achievements, keeping a smile on his face despite being an immuno-compromised young man. This winter so far has been particularly hard for him and he has been unwell (despite having his flu vaccination), but he has done his schoolwork while he has been unwell, making hay while the sun shines.

Mac still takes his medication as a matter of course and has been doing well on it. He needs to see Dr Muir just twice a year now and has been keeping his calprotectin levels relatively low with a combination of his medication and diet. Mac loves all aspects of film photography and would like to be involved in film production as a career. Over the last year, I have also become immune-compromised due to a number of conditions, and I am also controlling my C-reactive proteins (CRP for short) levels through a combination of medication, diet and exercise. Sometimes it works.

Mac and I share the some of the same medication types. It’s hard, and I can just imagine how hard this has been for a teenager. Mac is so wonderful!!

Trev and I will be in New Zealand for half of the Challenge and we will have no worries about doing the 150kms. I know we will do more!! This is our 5th year – we started in 2020. We want to help Crohn’s and Colitis Australia out as much as we can as we all have a vested interest. I hope one day a cure can be found.

So here we are, proud to be doing the Challenge to help raise money for Crohn’s and Colitis Australia – these diseases need to be eradicated! We are wanting to send him to Camp Fearless this year so he can meet other kids diagnosed with Crohn’s and Colitis. We also do the annual Live Fearless Walk. We are proud to be involved.

Cheers,
Suzie
Team Captain, Mac’s Crohnie Clan xxxx

You can support Mac’s LFC campaign here!

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