Harvey's Story Fish

Hi, thank you for visiting my website!

Firstly, I would like to thank my family, friends and many strangers who some are now friends of ours for their valued support and time to enable me to have raised sufficient funds so my future life is now changed for the better. As some of you know my name is Harvey Young, I am 4 years old and love life a lot! I was born on 18th January 2010, 6 weeks early. Unfortunately, my eagerness to enter the world has left me Spastic Dilegia cerebral palsy! That meant my future of walking, running and doing the fun things my friends would do was very slim. I would have had deformed legs and feet from my muscles pulling tighter on my bones. I use to get around using a walking frame.

However, my future life was changed dramatically with a decision that my parents Nick and Natalie made when I was just 3 years old. My daddy found out about an operation called Selective Dorsal Rhizotomy (SDR) that would help me to walk in the future. I underwent the operation on 20th June 2013 at St Louis Childrens Hospital, Missouri, USA. The operation meant cutting the nerves at the bottom of my spine that were sending the incorrect signals from my brain to my muscles telling them to contract. The operation removed all the spasticity in my legs so now need to strengthen the muscles that I have not been using to enable me to learn how to walk like all my friends.

The operation is available on the NHS, but it’s a post code lottery whether I will get funding or not and I’ve been told that recent applications in our area have been refused. Additionally, it often takes in excess of 18-months from referral to getting a decision on the operation on the NHS.

Therefore, my Mummy and Daddy intend to take me to St Louis, Missouri, USA, which is the world’s leading hospital for this operation, with over 2500 successful operations. However, as you can guess, this operation is expensive, costing around £50,000 to have this operation and the associated physiotherapy. However, once this money is raised I can be operated upon very quickly.

The operation has given me a key to my door, but my journey is still not an easy one! I now need to unlock the door with the key that has already been given to me. To do this, I have to do various forms of physio therapy and exercises to strengthen my leg muscles. My regular weekly exercise programme consists of:

  • Monday – Private 1 physio
  • Tuesday – Private pyhsio
  • Wednesday – day off apart from play!
  • Thursday – Stretching
  • Friday – Private physio
  • Saturday – out on my tricycle if the weather allows! And maybe fun at soft play
  • Sunday – learning to swim and of cause more fun and play!

I also have attended MPFitness in Perth, Scotland for 2 weeks of intensive fitness training and will be continuing this throughout 2014 at regular intervals.

I have quite an intensive exercise programme to enable me to build my leg muscles gradually and learn to walk with hopefully a nice posture and walking pattern.

6 months post op I can balance more or less whenever I like and with my hands in my jean pockets! This is something I could not do pre-op. My main success so far is walking 15 independent steps! These are the bigger things that I thought I would never be able to achieve but there are also lots of little things like: swinging my legs while sitting on a chair, playing with my toes, jumping and stamping in puddles, sucking my toes, sitting with my legs in front of me and sitting with my legs crossed while playing and in the bath and riding a bike are just a few small changes for me. My future activities when I am older will hopefully involve martial arts, which will be good for my legs and balance and eventually competitive swimming.

My mummy and daddy do not currently know how much physio and exercise I will need in the future. We have already raised enough to last until June 2015 but a lot can change within this time period depending on how progress, I am not just learning to walk, I am hoping to walk with a nice gait so lots of practice is needed! Therefore, we are still raising funds towards my physio programme and equipment.

If you would like to donate to help funding Harvey’s continuing physiotherapy , please visit the checkatrade just giving page or click here or visit http://www.justgiving.com/HarveyYoung

I would like to pay my gratitude to all the people who are supporting me for the operation. Please check this link to see who are supporting me.

Thank you,

Harvey X X