Family,  Special Needs Child

Welcome to Pasta and Peas

Pasta and Peas, the two things my children ate first when they actually started eating on their own. Something that might not even be worth mentioning for most parents. But with one of our children having the Jansen-de Vries syndrome it is something we will always remember. The first piece of pasta that Lucy picked up with her little fingers, put in her mouth and actually chew on it without disgust or screaming, left us speechles and close to tears. We never thought something so little could become something so big. Having a child with special needs, a gene mutation that makes her do things that might not appear average or “normal”, is a tough task to have and it’s a crazy adventure we just started. Here on Pasta and Peas we want to invite everyone to join this crazy ride. We want to show how our every day life with the syndrome is. What challenges we are facing, our ups and downs and the naked truth about raisng a special needs child.

Homebase Berlin

We are a family of four ♥ Me, Imke, the German mummy that works as a Marketing Manager. Dad Dean, the Brit who is the CEO of a Berlin startup. Flynn our 3,5 year old who loves nothing more than cars, climbing, dancing and singing. And then Lucy our 2,5 year old who loves dressing up, eats pasta nonstop and could play peekaboo all day. We are living in the heart of Berlin, Friedrichshain to be specific and wouldn’t want to raise our children anywhere else. Tons of families, kids, playgrounds, parks and cafés plus exactly the right vibe on being who ever you want to be. No matter where you are coming from, what you look like or how different you might be.

From development delay to Jansen-de Vries syndrome

Lucy was always different. From being the calm baby in her first year to being slow in crawling and walking up to her weird eating habits and her still non existing speech. In the first year the main comments we heard were “Oh how lucky you are to have such an easy baby!” and “Aww how cute and tiny she is!”. Months, growth spurts and her first birthday passed by and the comments started to change: “Still no steps? Not even crawling? You should get that checked!” and “Just give her a cookie. No kid is saying no to that!”. At that point we still thought, she’ll catch up. She is just a bit slower and therefore faster in other things. Half a year and some months of physotherapy later, doctors called it a rare but still normal developmental delay. No need to worry. But as her weird eating habits, behavioural differences and motoric and verbal skills still not improved, we started to look at things in a different way. Maybe there is something? Maybe there is an actual reason behind it?

After long discussions with our pediatrician, he finally gave us the referral for the SPZ. The SPZ is a special clinic that is connected to a hospital and therefore has much better access to all sorts of specialized doctors and their practices. Here our actual journey started.

Only 2 years old, Lucy was at the stage of a 1 year old. And nobody knew why. Pregnancy and birth were without any complications, there were no deseases and no relatives with any similar problems.

Nearly one year and what feels like a gazillion doctor appointments later, we got the answer from a genetics test: Jansen-de-Vries syndrome. A very rare gene mutation that explains every timy bit of Little Lucy. Her non existing speech, her eating habits, her digestive problems, her motorical skills and her sometimes different social behaviour. The mutation was a spontanious writing error in her DNA that could have happened to anyone.

Now that we finally understand that all of Lucy’s habits are connected to this one little tiny misspelling, we have a chance to see why she is the way she is. Now we can start our crazy adventure and see where our Little Lucy will go from here. With Pasta for her and Peas for her brother 🙂

One Comment

  • Stacy DeNoyior

    Lovely to discover this post! Looking forward to hearing more of your tender eloquence on this courageous journey… hope my adored Anthony can meet your lucky Lucy one day xo Stacy

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