My Blog

Every day brings a new adventure – and my Blog is where I get to share with you – my ffamily, my friends, and all my supporters..

California Dreaming

This week I’ll be getting onto a plane with Mummy and Daddy and flying to California.
 
It’s been a long time coming and there have been many false starts and dead-ends along the way, but this is what Mummy and Daddy have been fighting for for so long, along with so many others who have helped and supported me in the 26 months since my MPS2 diagnosis.
 
I know Mummy will be posting lots of photos and updates here as well as on my Facebook group All of one Heart – MPS2 Warrior.

 

Henry and Mum and Stars and Stripes

Alive and Kicking – and why that song means so much

I really loved the Ishinryu Kickathon – not just because of the money raised, but rather because of all the amazing kicking videos that were uploaded to WhatsApp.

Whenever I visit Grandad, I would point to his iPAD, and he would know I wanted to watch the latest videos and photos.  Most of them made me smile, and some made me laugh – but I loved seeing all of them.  I loved them so much that Grandad made a special video for me with some of my favourite bits – and then he set it to music.

Alive and Kicking was a hit song many years before I was born, and many years before most of those featured in the video were born.  As a song from the mid-eighties it reflects a time when Ishinryu were at the very peak of their powers – a time many look back to with pride and good memories.

The title itself perfectly sums up what Ishinryu are doing for me.  Turns out that Grandad spent many hours putting that little video together, and the more he heard the words to that song, the more fitting it seemed to be.

Ishinryu truly lifted me up – and they made it clear that they were here – just for me.  They absolutely followed through for me.

You lift me up,
You lift, me up, don’t you ever stop, I’m here with you
It’s all or nothing
‘Cause you said you’ll follow through
You follow me, and I follow you.

I know that my family worry about me, but they never despair because they know there are many good and strong people they can rely on.  The song asks a bunch of questions – and Ishinryu Karate are definitely one of the answers.

What you gonna do when things go wrong?
What you gonna do when it all cracks up?
What you gonna do when the love burns down?
What you gonna do when the flames go up?
Who is gonna come and turn the tide?
What’s it gonna take to make a dream survive?
Who’s got the touch to calm the storm inside?
Who’s gonna save you?

But most of all this song is about hope and optimism.  The feeling, that with the help and support of strong, caring people, anything can be overcome.

you lead me on till the feelings come
And the lights that shine on
But if that don’t mean nothing
Like if someday it should fall through
You’ll take me home where the magic’s from
And I’ll be with you

Thank you Ishinryu. 

Thank you for being with me.

Henry with Ishinryu Logo

Some of my Favourite Things

There are so many things that I like.  Sometimes it’s difficult to decide, so I’ll just list the things I like in no particular order;

I like toy cars.  You can never have enough toy cars and vans and lorries and buses to play with.  I have garages and tracks and roadways to put them on, but my favourite thing of all is to line them all up on the window-sill.

I don’t really like stuffed animals much.  I’ve been given Teddy Bears and other stuffed animals, but I’m not really interested.  But there is one favourite toy animal I like – that’s Bullseye from Toy Story.  Like me, he doesn’t say much, but he always manages to make the other toys understand him

I like watching the TV – especially the Disney channel.  My favourite films include Moana, Frozen and Toy Story (all of them).  I love to watch these films over and over again.  Disney is my most favourite TV channel.  Sometimes I take a liking to other films – especially when they make me laugh.  Recently I’ve been watching Drop Dead Fred and War with Grandpa.

I like sausage rolls.  Especially the ones Mummy buys me after we have been to visit the hospital (GOSH).  If I’m really good, and we have time, Mummy takes me to the Disney Store and Hamleys.  Visiting GOSH isn’t too bad at all.

Henry and his cars
Bullseye from Toy Story
Henry with Sausage Roll

Alive and Kicking – Thank you Ishinryu

Mummy bought me my first ‘karate suit’ when I was just a few months old.  I think she did it to make Grandad laugh (he seems to laugh a lot when I’m around).

When I was very little, Grandad would entertain me by kicking Grandma in the back of the head while she was standing up (don’t worry – he wasn’t ‘really’ kicking her).  I thought this was hilarious, and the more I laughed, the more he did it.  For some reason Grandma didn’t think it was very funny.

As soon as I could stand up, I would lean on my stair-gate and kick my legs out – just like Grandad, and sometimes we would kick our legs at the same time.  Everyone thought this was very funny – including Grandma.

Now, two years later, it seems that lots of people will be kicking everyday, and they will be doing it just for me.  I can’t wait to see all the videos and all the photos they post onto the WhatsApp group.

  • The Dragons Challenge is 30 kicks every day in May
  • Level 1 adult challenge is 50 kicks every day in May
  • Level 2 adult challenge is 100 kicks every day in May

My Karate friends can choose whichever type of kick they want and they can also mix them up if they want.

The Ishinryu Kickathon starts on May first.  Every day, throughout the month of May, a very special group of Karate people will be kicking just for me.  This makes me feel very special and very proud.  We even have a dedicated JustGiving page at https://www.justgiving.com/crowdfunding/ishinryu-kickathon

Thank you Ishinryu, and thank you to every single person taking part in the Ishinryu Kickathon for Henry Rice

Henry in Karate Gi

Say Hello To My Little Friend

Say Hello to my Little Friend

This is Henry.  Henry is three years old and a typical toddler.  He is endlessly curious about the world and loves going to new places with Mummy and Daddy.  He loves to visit friends and relations, and he loves to spend time with his grandparents, where he can get very spoilt if he’s not careful.

Henry doesn’t usually dress as a gangster – this was him at a recent fancy dress party; but he can act like a little gangster at times.  Most of the time he is very kind and loving and likes nothing better than to give big hugs to everyone he meets.

Henry has a very serious illness called MPS2.  But no one should be defined by an illness or a disability – least of all a three-year old.  Henry doesn’t understand that he is ill.  When you are three, everything is new and exciting, and everything that happens to you is just accepted and taken for granted.

One impact of MPS2 is that Henry doesn’t use many words or phrases, but this never stops him communicating exactly what he thinks and exactly what he wants.

I have taken the liberty of communicating on behalf of Henry in this Blog.  Knowing Henry, I’m sure he will not mind.  I hope you don’t mind either.