The surgery took place in May 2011 and went extremely well. Christopher could walk around with the help of a walking frame and we were discharged from hospital a week later. That's when the problems started. To cut a very long story short, Christopher deteriorated to the point that by January 2012 he was no longer able to walk as he was so weak. This weakness, although we didn't realise it at the time, even affected his ability to swallow. Every time he ate and drank, food was going into his lungs. Due to the muscle weakness he was unable to cough and so we had no idea this was happening. He developed aspiration pneumonia and ended up in ICU on life support as he could no longer breathe for himself. He recovered, but was desperately ill and unfortunately, 8 weeks after coming off the ventilator he ended up going back on one as he aspirated on his vomit one evening. This was the beginning of an utter nightmare for us as a family. We spent time in hospital, separated from our older child other than at weekends when he came to stay with us. Christopher was virtually paralysed, he could move his head but even that was hard work for him. A doctor at the hospital suggested a drug that we could try which is usually used with adult patients who have Parkinson's disease. He thought that this drug may help to restore some of Christopher's ability to move. Thankfully, it was the right choice and the drug worked. He takes it daily, and without it he quickly reverts to a sick child who is unable to move, speak or swallow.
Christopher still struggles to move as his muscles have wasted so much, but he uses a powered wheelchair which has given him a whole new lease of life. He can now eat and drink normally, and speak - which is fantastic for us as he has such a charismatic personality. Chris loves football. He always has. He watches it constantly on his iPad, the only 'toy' that he can operate on his own. He blows his whistle and shouts orders out while he is watching. He goes to a special school and he loves to play football at lunchtime. But he is the only child playing who is in a wheelchair and the other children don't pass him the ball very often. This frustrates Christopher as he desperately wants to take part and score a goal.
Due to the amount of time he spent desperately ill and without the 'miracle' drug that he is now on, his muscles wasted away and now he is struggling to build up muscle mass. He stands in a standing frame but this only uses the muscle minimally and doesn't build them up. He also hates being static as he is a child that loves to be on the move all the time. I have tried him in various types of walking frame but his muscles aren't strong enough for him to be able to move around in them as the frames are quite heavy.
Recently, a piece of equipment came to our attention. It has had widespread use and success on the Continent and a company is now importing it to the UK. It is called an InnoWalk. This piece of equipment is like a cross between a standing frame and a cross trainer. The child stands in the InnoWalk and then the equipment moves the child's legs in a cycling motion and arms in a forwards and backwards motion. This helps in a variety of ways that would be hugely beneficial to Christopher.
1. Muscles that are unable to be used in sitting or by simply standing are once again being moved and exercised.
2. The heart has to work harder and so there is also a cardiovascular benefit.
3. Christopher's digestive system is not great. He eats tiny amounts, probably because he is sat all day and food cannot move through his digestive system easily. Standing and actually moving would have a beneficial effect on Christopher's digestion.
4. Christopher's hips are beginning to displace due to lack of weight bearing and movement and we have been advised to think seriously about hip reconstruction. Children who use an InnoWalk have been proven to have far fewer hip problems and therefore less need for surgery. We are extremely worried about Christopher having to undergo any more surgery, and hip surgery is massive - involving breaking both legs in order to reconstruct the hips. We do not think that Christopher's body could cope with this amount of intrusion and seriously worry about the impact it could have on him. We fear that he would end up back on life support, or worse. To be able to halt Christopher's hip displacement would be life changing for him, saving him from pain and complications in the future.
5. We have been told by a top movement disorder specialist in London that because Christopher has walked before then he has the muscle memory and should be able to do it again. The problem is that his muscles have wasted so much, building them up is, at the moment, looking like am impossible task. This piece of equipment would really help to build up these muscles as they are encouraged to move in a natural way.
Christopher had an assessment with the InnoWalk in January. He managed 10 minutes walking, covering 300metres. He attended his Conductive Education session on the same afternoon, and rather than being exhausted and unable to participate as I had feared, he excelled and took 10 independent steps. He has not managed to do this since his deterioration! As a parent, I am naturally going to look at the positives, but myself and the physio believe that his muscles remembered moving in a walking pattern due to using the InnoWalk and thus, he was able to take these steps.
I truly believe that this piece of equipment could be life changing for Christopher. I even have hopes of him being able to kick a football around the garden again. Imagine that! At the very least, building up his muscles would enable him to roll over independently in bed and we could get a full night's sleep - something we haven't had for nearly 5 years now! Add to that the cardiovascular and digestive benefits and the positives are hard to ignore.
The cost of this piece of equipment is well out of our price range as I had to give up my teaching career in order to care for Christopher. Any donation towards the cost of this equipment would be most gratefully received. My head is full of dreams. Please try to help me and make them become reality.
- Knowsley Council Dress Down Day
- Ormskirk School of Dance
- Deborah Marshall
- Stuart Fraser
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