We hope that with these funds Alex can undergo new therapy techniques such as Activity Based Rehabilitation and the use of Wide Pulse Stimulation to help regain control. So far trails and studies have shown imporvements in those with spinal cord injury.
The go fund me goal of £3000 should cover one block of treatment for Alex in this revelutionary new therapy. The more money we can raise above this base goal means Alex can have more frequent and intense therapy, therefore hopefully developing more. It is key to do this at his young age to make sure he maximises his recovery potential as much as possible. It is vital he can begin this therapy as soon as possible.
Alex (aged 4) was born at 39 weeks via c-section as he was in breech position. It was a relatively normal pregnancy apart from little movement felt by me in the last 8 or so weeks. Alex did have additional scans as his sister has congenital heart disease, but Alex's scans were absolutely fine. A few hours after he was born, I knew something wasn't quite right as he had no grip in his right hand and his right eye was shut whilst the left one opened. The paediatrician didn't think there was any cause for concern though.
A couple of weeks later, Alex seemed to be having spams in his legs and little mini seizures while he was sleeping but the various doctors who saw him did not think it was anything to be worried about. Alex collapsed in October 2013 whilst I was feeding him. I needed to resuscitate him and he was then taken to hospital locally.
Once again, the doctors did not seem concerned apart from one registrar who had an interest in neurology. He felt Alex was 'neurologically abnormal' and referred him to GOSH to see the neurology department. They did a brain MRI but that was normal. However, on that same MRI, they noticed narrowing of his spine in the neck area. Further MRIs confirmed there was a narrowing in his spine between C5-T1.
What was causing the narrowing was puzzling, the neurosurgeons who said the only way to really find out and treat the stenosis was to do exploratory surgery. This took place in July 2014 when Alex was 11 months old. The surgeon found that Alex's spinal cord was tethered between C5 and T1. He did the best he could but overall we have seen no improvement in Alex's gross motor skills or fine motor skills in his right forearm and hand. The same surgeon said he had never seen this anomaly before and that Alex was in a series of one. In May 2014, he said it was unlikely that Alex would ever walk.
Alex has an undiagnosed spinal condition in that there is no name for it. He is classed at tetraplegic and we do not know yet if it is complete or incomplete. He has Horner's Syndrome (right eye). He has no control over bowel or bladder, his skin is prone to marking and he regularly gets episodes of autonomic dysreflexia. He is very sensitive to heat as he cannot regulate his body temperature. Alex does have emotional issues in that he finds it difficult to control his emotions and gets very frustrated. He loses his cool quite a lot and this is distressing for him.
Alex does enjoy sports, particularly ball sports like tennis and football. We do hope that this interest continues in the future and that we can find clubs for him to participate in. We consider him to be quite a 'normal' little boy and I do hope he continues to develop his independence so that he can be self-sufficient in the future, i.e. drive a car, dress himself and look after his own care needs, get on well at school, meet a partner when he's older (though he's already had three girlfriends and one boyfriend). He has aspirations now (he wants to grow up and touch the ceiling and look after pigs when he's older) and we hope he continues to have aspirations. We ultimately want Alex to be happy, as happy as anyone else who can walk around and has the motor abilities that he doesn't. We don't want his spinal cord injury to define him, just be a small part of him.
Therapy keeps us hopeful. We are realistic, and there's a fine line between being realistic and negative. We are certainly positive but are aware there is no cure for SCI at the moment.
Alex will/may never walk but there are other aspects of SCI which are more significant than walking. We would like Alex to develop as normally as possible, i.e bone structure. Therapy facilitates this. We would like Alex to suffer with less spams which cause him pain. Therapy can help with this. Therapy may help him regain some control over his bowel and bladder which is the main concern of adults with SCI. We would like Alex to be as fit and healthy as possible and therapy can develop this. If and when the cure comes for SCI, Alex will be in the best condition possible to benefit from this. If this is not in our, or his lifetime, he will still be healthy, happy and strong as a result of therapy.
Thank you for taking your time to listen to our little boys story and for any funding provided.
- Batt Family
- Elretha Koch
- Zaher Dannawi
- Kat Wotherspoon
- The Williams
- Sandamali Wickramasinghe
Organizer and beneficiary
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