Roo’s story

Hey everyone,

My name is Roo. I am three and a half. I love cars, trains, aeroplanes – anything with wheels. I like watching You’ve been framed with daddy coz it’s funny. I love milk, and kinder eggs are my fave. I love the seaside.

I don’t really like the park or ball pits, those places are crazy, or new places, or loud loud noises. Mummy says I can be a little shy or take a while to warm up. I just like places I know.

My Facebook page is to help you learn about ‘undiagnosed children’.

I have Global Development Delay (GDD). It means I’m a little slower to learn the skills and milestones ‘they’ set but we don’t know why. But hey, what’s the rush all the time!

I have some trouble ‘expressing’ my words, I know what I want to say but they don’t come out. This can be frustrating. But I have no problem in ‘understanding’ what you are talking about (so know biatching, I hear ya!)

Sometimes my eyes go a bit squiffy and turn in. This is called strabismus. I can’t yet find the words to tell me what it’s like.

I also have two small holes in my heart. (Mummy always said I’d be a heartbreaker! Sha-ding!!). I can’t be a pilot or a deep sea diver!

I have a bit of trouble walking. I can walk but I fall over a lot. It takes a lot of effort for me to take steps. But I feel wobbly I tell mummy. My legs get tired. I have things the doctor calls hypermobility. It means I’m really bendy. I’ll put that on my cv! I have hypotonia which means my leg muscles are weaker. And mummy was told now I ataxia which is a balance and coordination problem.

The doctors still don’t know why, so I had to have some more nasty blood tests.

I hate them they make me really cry. But mummy always treats me and takes me somewhere nice after.

So that’s me. I hope I can walk better soon. Especially next year when I go big school. But I am trying my best. And I’m making really good progress, mummy says she’s so proud of me. I am determined and happy. I learnt to swim with my armbands last week!

Bye bye
Love Roo (written by mummy)s

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