I’m a mum of a 6 year old who has LPLD.
My daughter Molly was diagnosed when she was approximately 6 weeks old. After a trip to our local A&E due to a significant amount of blood in her nappy we were sent by ambulance to a children’s hospital in Brighton who were better placed to identify what was wrong with her.
After starving her and doing numerous blood tests, two weeks later we got the diagnosis. I have to admit I was quite relieved as all sorts of diagnosis were going through my mind but that was the moment I had to educate myself on what LPLD actually meant.
Molly is brilliant at understanding her diet and knowing what she can and can’t have and I am very lucky that friends and family take it as seriously as they do. Yes its hard when she’s invited to parties and people always say “but she is going to be so healthy and slim” which is true, but i feel like saying “but she’ll never eat cake, ice cream, chocolate, bacon sandwiches, drink wine with her friends, sit on the beach and eat fish and chips out of chip paper, devour a subway after a night out……” all these things are going to be so hard. And I am quite scared about her growing up and the choices she might make.
Her diet at the moment consists of a lot of sugar which worries me also but it seems the majority of foods which are low in fat are high in sugar. I try to experiment with cooking and find alternatives to fats but there are only so many ways you can cook pasta with tomato sauce!
I also have twin boys who are about to turn 11 and tests have shown that they do not have LPLD. It is myself and my husband who are each missing a ‘code’ so our diets are fairly ‘normal’ but when we eat together we try and eat similar things to Molly.
However, this condition does not come cheap!! It is very expensive to eat healthily especially as Molly seems to eat all day and I find it very hard to say no to her!
It is still early days for us and all I can do is take it day by day and make sure that i am there to help and support Molly when she needs me.