As promised, here is a short video of Libby, 2 weeks away from being one year after her operation in America. It’s been a long, tiring, difficult, rewarding and amazing journey.

For those of you that see Libby (especially at school) walking around on her frame, you probably think – what’s different? She’s still using her frame, dragging her feet sometimes and still fairly weak. Well, I agree with all that but what you can’t see is her muscles and the lack of tightness now. I must admit, I wasn’t prepared for the total weakness that this operation was going to cause and that’s because I didn’t realise that Libby’s spasticity (tightness) was literally holding her up. This spasticity was taken away when Dr Park cut the nerves endings that were affecting her muscles and caused her to be very floppy.

What you see now when Libby is walking around is pure muscle built up over the last year through exercise. This is an amazing achievement for Libby, not only has she coped with the operation, she has had to endure a year of intensive physiotherapy that has got her where she is today. Along that journey, she has grown and when I’m feeling despondent, Libby’s very lovely physio Jill and my good friend Jane remind me that this is an achievement in itself to maintain what she has achieved through this growing period. We have been very lucky to have Jill (Bromley Borough Physiotherapist) & Judit (Hungarian Conductor) to help Libby to develop and achieve her goal to walk independently.

She can now stand and balance independently for up to around 3 minutes, prior to the operation she would be able to do around 10 seconds. She is walking really well when holding one hand and using one stick and I purposely ensure that I am on her weakest side to make her work extra hard! She can now sit, push up to stand, stand unaided and walk from that position by herself – she is still fairly wobbly but she is getting there. Also, very importantly because of this surgery Libby will now grow through puberty without extra growing pains (before the operation her muscles didn’t grow at the same rate as her bones and therefore, constant stretching was required to keep the muscle up with the bone).

Moving forward Libby will continue with physiotherapy hopefully as many times a week as we do now (big groan from Libby!). The more we put in, the more we will get out. However, we do get a few hormones kicking in so Libby’s attitude is sometimes not as easy going towards her therapy as it used to be – but I’ve always been one for a battle!!

I could go on forever but hopefully, this has given you some idea of what our last year has been about. We are extremely proud of Libby and we are lucky to have such a strong and determined Daughter. Ben has also been a star (tormenting and winding his sister up as much as possible!), it can’t be easy for him to see Libby getting lots of attention but he has coped really well.

We are seeing Dr Park on Monday 25th July and I will let you know what he thinks on our return.

There are now many many families from the UK travelling to St Louis for this operation, the waiting list is huge! Also, it has grabbed the interest of some surgeons over here in the UK and a hospital in Bristol performed their first operation only a few weeks ago.

We shouldn’t have to fight for what our children deserve but that’s life and all that leaves me to say once again is thank you all so much for helping us to make this happen, we are truly grateful.

Toni, Dave, LIBBY & Ben
xx