Hello, my name is Lana. I am 12 years old. I live at home with my mum and my pet parakeet called Bobby. I have PVL, cerebral palsy and epilepsy but this won't hold me back from aiming higher.

I am a very happy girl and I enjoy nothing better than being outside in the fresh air, walks at the beach, playing with toys and bubbles in the garden, being in my standing frame, reading books, messy play, I even love school but, above all the trampoline and lazy spa are the best (water play is my favourite thing ever)

2 years ago thanks to fundraising with just4children and the generosity of my page supporters I had SDR surgery which took away the spasticity in my legs and the debilitating clonus (shaky legs) I had. We were hopeful that the surgery would give me the opportunity to learn to take independent steps towards walking. Unfortunately, the surgery uncovered dystonia in my feet and ankles and this led to having major reconstruction foot surgery last year as my arch collapsed. It also caused severe external rotation of my hips where the muscles are so weak it makes my legs frog out when trying to stand.

Although I have lost some skills through surgery it was still the right thing to do and I have not given up achieving. I have worked so hard to regain my core strength and can now sit unaided on the floor, I can roll onto my tummy, I can pull to stand for the count of 15 with a molift providing my legs are strapped to stop my "frogging" and I am getting stronger every day.

Moving forward my goals have changed and the aim is now to work towards standing transfers and to get back into my walking frame.

After long discussions with the professionals involved with my care it is felt that the best way to achieve this would be to look into:-

Purchasing a new wheelchair to better support my hips and spine and to allow the possibility of standing transfers from the chair to bench and toilet. I have had an assessment and a new chair is on order which is approximately £6,500 with the voucher scheme;

Purchasing a freestanding Gantry hoist system for the garden to access my lazy spa and in ground trampoline both of which have many physical benefits. At almost 13 I'm too big and heavy for my mum to lift me. This would cost in the region of £2,500;

Another thing that we believe would be extremely beneficial is an "Innowalk". This is a huge decision and not to be rushed into due to the cost. The Innowalk is a dynamic standing device facilitating movement with weight-bearing in a standing position. I am fortunate enough to be able to trial this within my school setting and the team of professionals will be watching closely to see the benefits. This would cost in the region of £25,000;

I currently have hydrotherapy in school term time and we are looking into private hydrotherapy in the school holidays. I am unsure of the cost at present.

Thank you for taking the time to read about me and my goals and thank you for your support.

Lana x

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