I caught Polio from a vaccination when I was just 6 months old, which left me with partial paralysis of my leg and scoliosis. I had multiple orthopaedic surgeries and spent much of my childhood in hospital (back then you would stay in a children's ward to recover, anything up to 8 months). Whilst that sounds rather sad, I had not known any different, and as I grew into adulthood I was living with the effects of Polio relatively okay...I was grateful for life, even happy.
But Here's The Problem:
A few years ago, I had new symptoms of neurological pain, severe muscle weakness, multiple unpredictable falls, and extreme fatigue. After years of seeking medical explanation, with neurological tests, I was diagnosed with early-onset Post-Polio Syndrome. Post-polio syndrome sequelae are latent symptoms of poliomyelitis and are a significant burden to a person - who has previously been active and healthy, despite having contracted polio as a child.
Sleeping became a problem, even breathing became a problem. Whilst I was lucky enough not to be in a dreaded 'Iron Lung' after being diagnosed as a child, as an adult with post-polio syndrome and the consequent poor health, I've just suffered over a year of pneumonia and other chest infections and now have asthma and struggle with shortness of breath and wheezing.
Then, walking became a problem, and I now concede that I am 'disabled' - because for most of my life having Polio never stopped me doing anything.
For those of you who know me well, you'll know I am very social and very active in any community I end up being involved in. From the age of 11 years old, I have been volunteering for various causes, whether they are learning disabilities schools, hospices, youth charities for disadvantaged groups, or breastfeeding peer support. For the past year and a half, I have not been able to do anything that requires me leaving the house. Some weeks, I would only be able to get out of the house once, twice at best, and even then only to safe and supportive places like my family or in-laws homes. As we all experience lockdown, I know you can imagine a bit about how awful this feels, to spend most of your time at home.
After being told by my GP to stay at home for 12 weeks because I am at risk of respiratory issues, I have had to struggle with home life living in a property with stairs - which I cannot easily manage. During this pandemic crisis, my disability issues have become more pronounced and all my consultant and rehabilitation appointments have been cancelled.
What Have I Been Doing:
I have been back and forth to various orthotic departments and consultants who have tried to fit me with orthotics the NHS supply, and each time I have had to return with pain, my knee giving way, falls, and other gait problems. I have either been refused this new brace or told it was not possible to get on the NHS. After 3 years of trying, I'd just given up. Until family and friends suggested they would support a crowdfunding campaign to help me.
I have had a consultation at a private clinic and have had my gait (walking) assessment, showing that this brace will infact significantly improve my gait, and my pain. It is ideal with those with a diagnosis of polio and who struggle with this new neurological condition of post-polio sequelae as it is extremely strong, light-weight, it automatically bends and locks at the knee and has an ankle 'joint' that allows you to mimic 'normal' walking. I would have to undertake extensive physiotherapy to 'learn how to walk again', but I am more than willing to do this to reduce my pain and live life again without the risks of falls and fatigue.
With this new orthotic, I would be able to leave the house, with the children and know I won't randomly fall on the pavement or in the middle of the road. I hope to take them to the park again, to give to them instead of them always helping me. With this device, I will be more independent and know that I will be preventing long-term harm to my body by walking properly for once. I hope to be going to sleep every night without pain.
All that is left is to place the order and pay for this custom build orthotic (most people with polio have severely deformed and withered limbs so it needs to be moulded specifically to you, it also needs to be calibrated to your body shape and weight so that the joints function optimally to support your full skeleton not to fall as you walk)
What Is Needed?
A 'stance-control freewalk' orthotic by Ottobock or the LOC see here: https://www.ottobock.co.uk/orthopaedic-rehabilitation/solution-overview/free-walk/
I need to raise an additional £9,500 to add to my £2,500 savings to get one and get walking. The fees are as follows:
2-hour Consultation £160 - paid
2-hour Gait Assessment £180 - paid
What we are raising for:
1. The first casting for the Knee, Ankle, Foot Orthotic (KAFO) - £660
2. Fitting and adjustments for the Knee, Ankle, Foot Orthotic (KAFO) - £150
3. Creation of the first 'mould' of the KAFO to test and walk with - £6379
1. 2nd casting of the Knee, Ankle, Foot Orthotic moulded in the final Material 'Carbon Fibre', a custom made Ottobock Freewalk/Walkabout Orthosis with calibrated knee and ankle joints and sensors that would allow me to step with an 'unlocked' knee and that would 'lock' when weight-bearing - £5621
2. Fitting and adjustments included in the above cost (1)
Total savings: £2,485
Total required: £9,515
Amazing perks for supporting me that you can’t live without?
Here's the bit where I tell you what amazing perks you will have for supporting this that you can't live without, but mine's a kind of promise. When I am back on my feet, I will start to volunteer again. Giving back to the community, as I used to do my whole life. I understand there are others in this world who struggle more than me; that I have food, shelter and love in my family, so I am more than privileged most.
Does that affect you directly? Not necessarily, but at the moment I have the stats and social proof to show I have volunteered my time, energy and personal funds to help thousands of mothers and children around the world when breastfeeding triggers negative emotions, and I am committed to continuing my work when I am better. And as mothers raise our future world, I hope this will be enough of an incentive to support my plea.
If it's not I have some Merch to giveaway (mostly breastfeeding advocacy related), and I am well versed in research ethics and am happy to look over any research protocols and patient-facing literature if you need to submit your study to an ethics committee. Not sure what else I can offer, but please reach out to ask.