Mikayla Butler
Operation SuperBEN!
Fundraising for Tree of Hope
Story
I'm fundraising for my son, Ben. He is 14 years old and due to complications during my pregnancy Ben has cerebral palsy. This condition causes tightness and spasticity in both arms and legs. Sitting unaided is difficult, commando crawling and rolling is his main way of getting around unassisted & walking is something Ben would just love to be able to do unaided but can't. He needs physio daily, to be put in equipment such as wheelchairs, walking frames & standing frames to avoid him developing deformities as he's growing & needs help with feeding, drinking, personal care & all other daily tasks we all take for granted.
In October 2014 we took Ben to St Louis, Missouri, America & for the life-changing operation. SDR (Selective Dorsal Rhizotomy) removed the spasticity in Ben's legs, therefore removing all the pain & enabling Ben to use his "normal" muscles. We are fundraising for any physiotherapy & equipment that Ben needs post op. We are very grateful to have been able to take Ben for this life changing operation but the essential post op therapy costs £15k a year!!
We're now 9 years post op & we're still needing to fundraise for essential post op therapy. We cannot undo all the hard work Ben has put in over the years and by stopping this treatment he will decline.
We are incredibly lucky to have raised a massive amount to be able to take Ben to America & since the surgery he's progressed in many areas, but post op Ben needs essential intense physiotherapy. The money raised covered the surgery & 1 year. Ben's post op therapy costs on average £10-£15k a year!!! Every penny raised would go towards giving Ben the opportunity to get the most out of this operation!
Ben has had intensive physiotherapy courses at a centre in Oxford in the past. He has therapy 3 hours a day, for 8 days, with highly trained therapists using equipment they don't have any where else in England. Its hard work and we try and take him at least once a year, although due to operations, GCSE's, etc this has been more difficult of recent years. He also has 2 sessions weekly with a private therapist at school, which he really enjoys and is happy to work hard for her! They have a great relationship & we're so grateful he puts in 100% for her!
Without ongoing treatment like this Ben will fall behind. But again, this therapy doesn't come cheap.
Since starting this extra work with Ben he has rocketed with improvement. His strength has improved and he is more stable and aware. His sitting has become more stable, hands more open, finger feeding better and drinking through a straw and from a cup-this is something he couldn't do pre-op. He can stand and walk so much stronger, although still with assistance. His biggest improvement is communication & transitions between positions. Pre op Ben could say 4 words in a row, now we’re having conversations with him & others are understanding better all the time! That alone is priceless!
So, please, please support Tree of Hope to help Ben have the treatment he so badly needs.
Ben is such a determined, fun and happy boy but his physical restrictions are extremely frustrating for him. His mind is so willing but his body just won’t let him do what he wants to. We would like to do everything we can to help him overcome these challenges and live his life as full and as pain free as possible!
We are raising money for Tree of Hope to help fund this ongoing treatment and any donations would be greatly appreciated!
Would be willing to help us in our journey to change Ben's life? By donating safely on this website, being sponsored to do something, organize an even, cake sale, party, football match, golf day, etc, donating a service or prize to be auctioned off or used as a prize at one of our events...any help will be hugely appreciated!!!!
Please please please keep Ben in mind-you'd be changing his life!
For more information on Ben please visit his facebook page: Ben's Therapy Fundraising" or by clicking on https://www.facebook.com/pages/Bens-Therapy-Fundraising/200857373319514?ref=ts&fref=ts
Instagram: @The_Butler_Family6
Thank you for reading
Thank you
XxxX
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