Ufi Will Walk - Challenge #3: Paddle the Channel
Thanks for visiting Ufi will walk!
Who is Ufi I hear you ask? And why can’t she walk? And what can I do to help this little girl? Well…allow me to elaborate.
Ophelia (Ufi to her friends..rhymes with 'Hoof-y' btw) is our 3 yr old daughter and she can’t walk. Ufi suffered a life changing brain injury at birth (birth was 3 months early, IN A TOILET. I mean, come on…a break would be good here) which has resulted in Cerebral Palsy.
Cerebral Palsy (or CP to those in the know) affects people in different ways. For Ufi, this means her legs are too stiff for her to use as her beautiful brain is not really talking to her lovely legs in the way it should.
Imagine having cramp in your thighs, calves and feet so strong your toes point to the floor, and it takes an adult’s full strength to bend your foot to 45 degrees. It’s like that, 24-7 for her and it takes an army of professionals to help manage this (paediatric neurologists, physiotherapists, hydrotherapists, conductive education therapists, endocrinologists...the list is long!)
‘But wait!’ I hear you say. ‘Surely there must be groundbreaking surgery that can allow her brain to talk to her legs (hello legs, how are you?) normally and she can learn how to use her legs again so she’s not in constant pain?’
You’re right! That procedure exists. It’s called SDR (Selective Dorsal Rhizotomy) and it’s a totally minor procedure where her spinal column is opened up, nerves are severed (note to self, ensure surgeon closes up spinal column after surgery) and she is retrained to walk, with 3 yrs of post op therapy (around 5 hours a day, every day, for 3 YEARS). Like I said, minor.
Life changing-ly amazing, right? Unfortunately, as a great singer once said: ‘Freedom isn’t free. It costs folks like you and me.’
That cost is going to be up to £50K.
(update: we would have had to raise £100K, but by sheer chance the NHS is now helping to fund the procedure for very select cases - Ufi's is one of them and we're eternally grateful for this!)
You just need to click on the big yellow 'DONATE NOW' button on the top of this page to show your support.
Ask yourself: Is there anything you WOULDN'T do to give your child the chance of being able to walk?
Well, we’re going to do a lot. In fact, we’re going to set 5 intense challenges to push us (us being Ufi’s parents and those who are brave enough to join Team Ufi) between now and 2020 to raise funds to reach our £50k target. We're going to break our target down into individual challenges, the first 3 of which are:
Challenge #1 (Completed)
Team Ufi to paddle board 100KM from the source of the River Trent to the centre of Nottingham over 2 days in early Aug 2018. Huge respect to Marc Munier and Michael Craig for joining Team Ufi on this challenge.
Challenge #2: (coming really, REALLY soon - Brighton Marathon, 14th April 2019)
Team Ufi to run Brighton Marathon in April 2019. Double Ouch.
The wonderful Natalie Orringe and Marie Knight have agreed to join me and put themselves through severe pain and suffering for our little girl and run 26.2 miles on the 14th April: these girls are warriors and, are NOT to be messed with.
Challenge #3: (Paddle board the English Channel. Oh, Dear God)
Team Ufi to paddle board across the English Channel in 2019. (Team Ufi don't know this yet, but anticipating a triple Ouch situation here)
SO YOU CAN HELP...YOU CAN HELP UFI WALK.
You just need to click on the big yellow 'DONATE NOW' button on the top right of this page to do so.
You can give an inspirational little girl the chance of walking and, take extra warmth and fuzziness in knowing that we're going to try and raise above and beyond what is needed for this operation and donate these extra funds to Whoopsadaisy and the Early Birth Association , 2 amazing charities that have transformed our lives, and Ufi’s. We want to help others who may go through a similar journey to ours
Think about it: ‘If you don’t throw in your buck ‘o five…who will?
Help us reach our goal and help Ufi walk. Mahalo.
So, it's been an intensely busy few months since Ufi's fundraising event: we were due to paddleboard across the English Channel this week, but a combination of Ufi's operation (happening in less than 48 hours btw), and moving house as we speak means we need to delay this challenge.
A lot of friends are (quite rightly!) questioning our wisdom in taking on not just a house move, but a HUGE renovation project at this time. Well, it's all about future proofing :)
The opportunity arose to buy a new house 7 minutes from where we currently live that has minimal step access and, somewhere we can create a ground floor bedroom and accessible bathroom for Ufi. If you live in Brighton, you'll know that combination of no steps to your front door and ground floor space is a rare mix....so, we decided to take a leap and, hopefully we'll be able to create an amazing home for Ufi for many years to come.
Right now, we're packing ahead of going to Great Ormand St Hospital tomorrow (or, GOSH as those with intimate hospital experience call it) where we'll reside for August.
Wish us luck, it's going to be tough, intense, mentally and physically draining....but ultimately an immeasurably worthwhile experience for Ufi.
For now, Mahalo.
A huge thank you to all you Ufi Walkers who made it to the event on 2nd June and, huge apologies to those of you who couldn't actually get in due to it being so popular!
We never thought it would be that busy, but it was absolutely fantastic to see: a huge, monstrously big thank you and hugs to Katie, Marie and Sara for doing all the work and bringing this to life, along with Tor from Hush Beats Silent Disco for providing the kit ( https://m.facebook.com/hushbeatsdisco) x X
And, of course...the one and only Music Mike for appearing, thank you! ( www.musicwithmike.co.uk)
We raised just over £1.8K on the day which is phenomenal and, gets us that much closer to our target, thank you all!
If anyone has an idea for a fundraising event, or is looking to undertake a challenge and needs a good cause to fundraise for, then please let me know: it's down to the awesomeness of people like you that we'll be able to reach our target (Ufi's nursery are holding a 'Wacky Week' this week, encouraging all kids to come in dressed up as crazy as possible), so all event ideas are welcomed.
As always, huge thanks again to everyone from Team Ufi.
And, as an upcoming teaser....were close to finishing a children's illustrated book: as you can guess, Ufi's story was the inspiration for this!
More details to follow, but we anticipate publishing this for Christmas launch. In fact, anyone here who works in publishing, or has contacts...we'd love to chat more on this.
For now, mahalo.
I can't thank Marie and Natalie enough for putting themselves through that for Ufi: thank you both so, so much. X x X
The artic headwind on the final 6 miles certainly didn't help, but the support of the crowds certainly did: if you haven't run a marathon before, the energy of the crowd is what drives you on, it's an amazing feeling. Also, the next day is agonising: stairs are medieval torture instruments :(
But it's been so worth it for Ufi. We've raised almost £14.5K to date, picked up print, radio and TV coverage to help our fundraising journey, and we're overwhelmed by the generosity of friends and strangers, thank you all XxX
Next up: paddle board the English Channel. No biggie.
Mahalo from an aching Team Ufi.