I'm running the Rob Burrow Leeds Marathon on Sunday 12 May 2024 to raise awareness and money for ITP.

Our son, Horatio has a rare blood condition where his immune system attacks his platelets leaving him with too few platelets.

He has just turned six and already in his little life has spent too much time in and out of hospital- he's had swine flu, parechovirus meningitis and measles. As a result he now has ITP. Unlike the others that were viruses' that went away and he recovered over time from, he's stuck with this one and there is no cure.

Having ITP means he is at risk of a serious bleed, either from impact or just simply a spontaneous one.

He started treatment in January 2023 and has been going to the Haematology and Oncology unit at LGI every Thursday since. He has his bloods done, he sees his consultant and they then give him his treatment. It's just routine for Horatio now, he doesn't flinch, he doesn't moan, he doesn't question it, he just cracks on.

The drug that Horatio receives costs the NHS £1,600 a week, that doesn't include the costs of the nursing team he sees and his consultants time on a weekly basis. Despite the high costs and because it's rare, there isnt enough money for research and to fund trials to find a cure.

There are so many nasty side effects to the treatment but at the moment other than the fatigue, the bruising and his weekly hospital trips, you would never guess there was anything wrong with him. He's the most energetic, boisterous, yet kind hearted boy. He lives for his mates, school and extra curricular activities. He does Karate, swimming, football and trials biking. He also loves riding his bike and his scooter.

He has to wear a helmet while he's at school and while doing some of his activities to protect his head and reduce the risk of injury and a bleed.

He's the most precious little thing in the world and doesn't deserve the card he's been dealt. He won't have the privilege of ringing the bell like a lot of the children he sees on the ward, fighting Leukemia do, but maybe one day when they find a cure for ITP, our money raised may go towards another child being able to.

When he grows up he wants to be a rugby player and a paleontologist.

His dream is to go to Africa on Safari to see the Elephants but until his treatment starts to work and his platelets are high enough he's not allowed to travel abroad on holiday.

I've always loved playing sport but running definitely isn't my thing, so this will be a real challenge for me. My knees are on their last legs from too many football injuries, but when I'm in pain and struggling, I'll continuously think of the struggles and pain Horatio deals with- I won't miss a single training day from the plan or stop an inch before that finish line.

I would really value and appreciate any support along the way, whether that be a running friend for the training, a cheer on route on the day, a share of this post to raise awareness, a decision to start donating blood or a donation on my just giving page...

Thank you for taking the time to read this and visit my JustGiving page.

https://itpsupport.org.uk/

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