Carrie’s Dad Answers Some Questions About Wilson’s Disease

This evening I asked Carrie’s dad some questions. He revealed much more of his thoughts than me and Carrie thought he would. His answers were so heartfelt and you can’t help but wonder what it must be like to watch your son/daughter suffer from an illness.

How does it feel to have a daughter with Wilson’s Disease?

It’s terrible – anything bad that happens to your daughter feels terrible. No matter what disease it is, such as Cancer, it will always and has, left me heartbroken.

What’s the hardest thing for you to cope with?

Seeing my daughter and how she used to be in comparison to now. There’s been such a big change from then to now. I’ve seen Carrie go from being a really outgoing person to being virtually housebound.

Do you have any advice for any other parents who might have a son/daughter with Wilson’s?

Yes – to pray to God that they catch it early and if they’re lucky enough to have a brother or sister, they might be a liver match in order to be a donor. It’s not really tested for, there needs to be more testing for this disease. If you are aware that you caught it whilst you’re young, it can help you, whereas others can be in the situation where they are beyond treatment.

1 in 30,000 people are affected around the world, and my daughter is one of them.

Do you think Carrie is coping well?

Yeah I do. Considering everything that she’s been through, she’s done really well. I wouldn’t wish the disease onto my worst enemy. Carrie’s condition has caused hardships with her daughter and that’s just as upsetting for Carrie as the disease being inside her is.

Do you have any other comments that you would like to add?

I just hope everything will be alright for Carrie and then I will be alright. The doctors kept saying that Carrie was run down. There should be a stage with their code of practice for the condition of a person to be tested further, especially when they’ve been to the doctors so many times are their feelings are worsening.

I came home from work early once to go to see the specialist in Birmingham with Carrie. Their advice to Carrie was to “Move to Birmingham…” and neither of us thought it was a good idea, as Carrie needs be around her family and friends.

The feeling is more than upset, going from pillar to post. It’s crazy when there’s an area in Salford Royal for Wilson’s. We’ve had to spend two days in Birmingham before now to discuss the disease with dietitians, specialists etc. They actually prescribed Carrie with these milkshakes at one point, which had copper in, when Carrie shouldn’t be having anything with copper in.

My opinion is, if I keep going down the same road, we will have to seek legal advice. Whenever my daughter needs me I’ll be there.

I don’t mean this in a spiteful way but I prefer the fact that I work away. It can be hard but in a way, it helps me to cope a little better not having to see what the disease is doing to my daughter every day.

Thank you to Carrie’s dad for his honest and touching answers.

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