Kierans Message

Hello and welcome to kierantowalk.co.uk, a site setup to help fundraise for Kieran Forde-Thain for an operation to help him walk independently.

For those of you who don't already know, Kieran has a form of Cerebral Palsy known as Periventricular Leukomalacia (PVL). This affects a small part of his brain and means that he has spastic diplegia (limited use of his legs, therefore unable to walk unaided).

Kieran is 5 years old and lives in Davyhulme - Manchester.

If you would like to know more about PVL, visit: http://en.wikipedia.org/wiki/Periventricular_leukomalacia

There is an operation available in Missouri, USA known as Selective Dorsal Rhizotomy (SDR) which involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord.

Again, if you would like to know more visit the St Louis Children's Hospital website page specifically about SDR: http://www.stlouischildrens.org/content/medservices/AboutSelectiveDorsalRhizotomy.htm

We sent MRI scans of Kierans spine and brain, a spine and hip Xray, general medical information about previous procedures such as botox that he has had done, along with a short video of Kieran doing specific exercises such as sitting to standing position, walking with his frame, crawling, rolling and foot movement such as wiggling his toes (which he can't do) for the consultant surgeon Dr Park to screen to see if Kieran was suitable for this procedure.

You can view the video here: http://www.youtube.com/watch?v=VQ6oZyC2Cbc

We received confirmation a couple of weeks later that Kieran had been accepted and would be an ideal candidate for this procedure.
The letter stated:

"If Kieran has this surgery, they would expect to see the following improvements:

• his spasticity to be permanently reduced
• his sitting and standing postures will improve
• his balance will improve
• his transitions between postures will be easier and faster
• his level of comfort will improve
• we expect that he will be able to walk independently"

Obviously, after being told by professionals here in the UK that he will never walk unaided this will be life-changing for Kieran.

This operation is not available to Kieran on the NHS. The Robert Jones & Agnes Hunt Hospital in Oswestry does perform an operation that is also called SDR but that is where the similarities end. The procedure at Oswestry is a 6-7 level traditional laminectomy (see link), and recovery time is 6-7 weeks. The operation is also far more conservative too, with only the s1 root bundle being selectively cut. The selection criteria is the main reason that Kieran is not suitable at Oswestry, as they want children who are over 6 years old and are already walking independently. Kieran is 5 years old and cannot and will not walk independently without surgery.

We will need to raise around £60,000 for this procedure and Kieran will be having it done on the 26th July 2011.

In order to help us you can visit our DONATE page, or go through one of our PARTNERS who donate a portion of the sales they make as you have found them through our site.

As of 31.03.11 we are now supported by Caudwell Children charity, for more information please click here

Thanks

Jonathan Thain, Amanda Forde, Kyle Saxton and Charlotte Fraser