Recognizing that something isn't quite right can be a challenging experience. In many cases, it takes a long time before a patient receives the accurate diagnosis. And when that diagnosis turns out the be a rare, life-changing, and severe disease, it can come as a shock.

This is the story of Poppy and her family and the challenges of living with a rare disease called a urea cycle disorder (UCD).

I am Ali. I am married to Alan and we have got two children: Lucy, who's nearly 12, and Poppy, who's nine. Poppy, at the age of two, wasn't walking, she wasn't talking. We knew something wasn't right. And despite all of those conversations with the GP and the health visits, nobody seemed to want to listen. And at two years old, she had a seizure at home.

I'm Poppy and I live with my mom, my dad, and my big sister Lucy. I enjoy doing football and cross country and I quite like riding my bike as well. I like to go for my swimming lessons on in one day. I have to be careful cuz I'm only allowed 32 grams of protein. When I don't feel well, it's really important that I have to tell someone otherwise it could get a lot worse. So I really need to tell someone straight away.

For us as a family, it's been hard. There's been times where you have s sat with Poppy at nighttime because you know that she's not well.You know that she's on her emergency regime and you are: Do we go to the hospital? Do we not go to the hospital? Shall we just go and get her ammonia level checked just to make sure.

Poppy's been brilliant. Poppy's kind of lived with her condition since she was two years old. We are now nine feisty, independent years, and she just wants to be as normal and treated the same as everybody else. She knows that she has to take her sandwich when she goes to a party. She knows that she can't always have a school dinner because the school dinner doesn't work for what she can have. She knows that she can't just have a kid's meal. When you go out for tea she's got to have everything weighed. She's got to have it measured.

If you were diagnosed with a urea cycle disorder, talk to the medical staff. Make sure that you are leaving hospital feeling confident that you know what to do in an emergency situation. Day-to-day things will crop up, but you can deal with those. It's making sure that you feel confident if there was your child was to be sick, that you would know what to do. Talk to those professionals.