Raising PKU and non-PKU siblings under one roof and at one dinner table can have its challenges
In honour of Siblings Day, we spoke with Kelly Thompson, Mum to Lily-Mae, 7 and Alan, 8. Lily-Mae has PKU and her big brother Alan was born without the condition. No other members of Kelly’s family have PKU, and when Lily-Mae was first diagnosed, it was difficult for Kelly to comprehend exactly how it would impact their lives.
What was it like for you when you found out your daughter had PKU?
I remember when I first got the call. I had no idea what PKU was, and even after driving 37 miles to the hospital, and speaking with the doctor, I felt none the wiser. I had never heard of anyone having this condition, and it just didn’t seem real. I remember calling my partner and asking him to speak to the doctor, so he could help explain it better to me, and it helped to talk it through with someone else.
I spent the next few weeks researching ‘PKU’ online, and then joined some UK and Ireland Facebook groups, which gave me food tips and I could ask more questions that I didn’t feel I could ask the doctor or dietician.
7 years on, and I am still learning something new every day.
How did your non-PKU child, Alan, initially respond to his sister eating different foods?
I distinctly remember Alan, at the age of two, running in shouting ‘Mummy, Mummy, Lily-Mae has taken my chicken nugget!’. That was my first recollection of him understanding that his little sister couldn’t eat certain foods.
Alan has always been very caring and has always looked out for his little sister. He will never tempt her with foods and they rarely fight or argue, and if they do, it is never about food.
How did you explain PKU to Alan, your non-PKU child?
I told Alan that Lily-Mae couldn’t eat some foods, as she would become poorly, and that was a good enough explanation for him.
I have not really needed to explain it to him again, as he sees me preparing different food for each of them, and it is just part of our life, so he rarely questions it.
Do you remember when Lily-Mae first understood that she couldn’t eat the same food as you and Alan?
We went to Cornwall in 2016, when Lily-Mae was four years old. A lady came over and asked if we all wanted a bacon sandwich, and before I could speak, Lily-Mae said ‘I can’t eat that, I have PKU’. And that was that – she had picked it up without us even having to tell her.
Tell us about meal times!
I always cook Lily-Mae the same food as us, only without the meat and with low-protein alternatives for the pasta, rice or bread. That way, all of the plates look the same, and she never even thinks twice about it.
To give you an example, we can get PKU friendly garlic bread, which Lily-Mae loves and so myself and Alan will have regular garlic bread, alongside rice (low protein for Lily-Mae) and bolognaise (veggie for Lily-Mae/meat for us).
What about when you go out? Does Lily-Mae find it hard when Alan can have anything he wants and she has limited choices?
Sometimes she wants something she can’t have, and instead of focusing on the thing she can’t have, we show her all of the things she can have. Making a positive from a negative always helps. For example, at the Zoo yesterday, Lily-Mae wanted a Calypo Duo, which was half milk, and I said ‘Oh look, they have Twisters! Yey!’ And she was content with a Twister. It is all about how you word it!
Does your non-PKU child ever feel left out, or of second importance?
I am very lucky that Alan has only ever wanted to help me look after Lily-Mae and police her eating habits, if they are staying with family or friends. Alan proudly tells everyone that his little sister has PKU, and when they respond with ‘what is that?’, he loves to explain what it is and what food she can and can’t eat. It can be quite the talking point!
What would be your advice to new parents of a child with PKU, who may have older non-PKU sibling(s)?
I only just found out about NSPKU and all of the support that they can provide. A few people from this organisation have helped me immeasurably. I also think that online support groups are great to provide answers to any questions that you might have about food and recipes.
I would also say that it is really important to talk about PKU openly with your affected child and their non-PKU siblings, so it just becomes a way of life. The more you talk about it day-to-day, the easier it gets.