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Jevgenija Naumova Triantafillu hasn't added a story.
Victoria is 8 years Old.
She have spent a lot of time in hospital trying to find out what is her overall diagnosis but although she has lots of conditions and challenges Victoria is considered a SWAN (someone who has a Syndrome Without A Name).
She has neuromuscular disorder which doctors at Great Ormond
Street cannot diagnose yet. At the moment it is a mystery to the
health professionals but they also said that it is untreatable
life-long disorder. Victoria's speech is severely delayed but it
never stoped her from finding ways to communicate with others. She
would use her facial expressions, sign language, finger spelling and
her special communication device all in one sentence to communicate
with others. Her walking and posture are poorly, she gets tired very
quickly with a lower back pain and quite severe knees pain. She
finds it hard to keep up with her friends, falling over constantly
due to loosing balance. Last muscle biopsy showed muscle atrophy.
It also affects Victoria’s hips. She has DDH(developmental dysplasia
of the hip) , the muscles do not support her joints properly.
Victoria had bilateral rotational osteotomies at 5yo to correct the
DDH, but it did not improve her problem/difficulty walking and
running.
Victoria is very happy, lively, gentle, always smiling little
person. She has been a real warrior through her ordeals. She is very
popular in her school and much supported by her peers.
But the difficulty she and we as a family face is mobility.
Victoria is very active, we love going outside to explore, travel in
all terrains like going off road in the parks, going to a beach or
even hiking in the mountains. We found a wheelchair provided by NHS
is NOT equiped for such activities, can not withstand such vigourous
use. We've changed three wheelchairs due to breakage in the last two
years. Plus NHS budget cuts does not help our local wheelchair
services in provision of better options. They were not able to
provide such a thing as basic wheelchair spoke guards to stop
Victorias fingers being caught in wheels.
After over a year of searching and researching, we have found a wheelchair that ticks most of the boxes.
- It can be tilted back in case Victoria falls asleep in her chair (which happens often as she gets tired easily), unlike in her basic chair she just slops forward or sideways, with no support.
- It is light and easy to maneuvre.
- It is equivalent to JEEP great Off Road experience ;) Doesn't get stuck in smallest cracks threatening to throw the passenger out of their seat.
- SO much easier on carrers' wrists and back when pushing the passenger.
- It is very well made and should last for years and grow with Victoria.
- It has good back support to avoid developing scoliosis.Offers unprecedented comfort and support, because it is anatomically formed to suit the human shape, not two pieces of fabric like in basic wheelchair.
Just read reviews from people who travelled the world in Trekinetic.
We are sure Trekinetic wheelchair will give my daughetr more freedom and independence! It will let us to do more, to explore more as Vicky is growing bigger and it is getting harder for me to carry her in my hands to places as we had to abandon our present wheelchair at the bottom of the paths.
We had a quote and it came down to £6388. That is where the plea to help to fund this wheelchair is coming. Me, Jevgenija, the mother of Victoria, asking for help. Please help me to raise enough money to give my precious Victoria more freedom, independence and enjoyment of outdoors with a help of this special wheelchair.
Just look at her enjoying it in a showroom :) You can hear her laughter <3 <3
Very BIG thank you to all of you for taking your time to read and help. It will be very much appreciated by both Victoria and her family.
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