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The Volentia Mini Mud runners are doing it again but this time Bobby and Ryan are joining us.  They are going to run a 9km Mini mud run obstacle course on Saturday 17th October.  They are doing this run to have fun and raise much needed funds for Bobby and Ryan.

BOBBY AND RYAN’S STORY

Bobby and Ryan from Rugby were born 2 months premature; Bobby in 2004 and Ryan in 2009. Due to complications at birth and immediately after they suffered brain damage called bilateral periventricular leukomalacia. This is when blood supply is cut off and causes white matter damage. The periventricular area deals with processing of signals and has cause spastic quadraplegic cerebral palsy. Bobby is also on the blind register due to cortical blindness, meaning that the signals from his eyes don’t get to the right part of the brain to process the information so his vision isn’t functional.

Bobby can crawl in a cross between commando style and a kind of bunny hop pulling both legs with him at the same time with little Independent movement from his legs. He can sit in ‘w’ sitting where he sits between his ankles while in a kneeling position. With assistance he can get in and out of his wheelchair, and on and off a bench. He can take a few supported steps but due to having low tone in his trunk and poor head control he is unlikely to progess further.

Ryan is incredibly tight in his legs and it restricts his movement and ability to progress further with physio. He can’t sit or stand but crawls using his arm to pull himself along on his tummy. He has very little movement in his legs and when he is doing activities they tighten up even more. His legs pull inwards and tend to cross at the knees making it difficult to change him and causes pain when we try to separate his legs to change and put trousers on.

We are in the process of getting Ryan a motorised wheelchair which will enable him to be able to go ‘off road’. However, due to Bobby’s visual impairment he is unable to have a motorised chair so we need an all terrain wheelchair to be able to join in with family activities. The boys have 6 brothers and sisters and for a while have been unable to join in most of our activities like taking the dog for a walk and going for country walks. Previously we used to take the bikes and Bobby and Ryan would go in a bike trailer but they have outgrown it so for the last 18 months we haven’t been able to do much of our usual activities.

Ryan needs surgery to help the spasticity in his legs called selective dorsal rhyzotomy (sdr for short). This is no longer available on the nhs as of February. The surgery is on part of his spine and cuts some of the nerves so will stop the signals causing his muscles to be so tight and stop them from spasming so much. This will make life in general much easier and cause less pain and restrictions for him. His physio believes that once his muscles loosen a little he will be in a similar position to where Bobby is now and will enable him to work on progressing further as he has good trunk control and head control. So, he has a good chance of working towards walking with a k walker or other aids.

Should we exceed the target amount (or if we do not raise enough funds, or they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.

For both boys the funds will give them treatment or equipment which with be life changing for them and improve their quality of life. Both boys have the ability to melt everybody’s heart that they meet and they just need a chance to be able to develop to their full potential and be able to join in with family activities once again.

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