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Ava is our 17 year old warrior. She as born six weeks prematurely, initially appearing perfectly healthy but at 10 days old our world fell apart when she was diagnosed with hydrocephalus which caused a life threatening build up of fluid in her brain. An infection had caused damage throughout every section of her brain, damaging her eyes and leaving her blind. Ava went on to be diagnosed with cerebral palsy, which effects all her limbs, has dislocated her hips and she has complex, uncontrolled epilepsy.

Ava initially coped very well with her condition and was making slow and steady progress. She had learnt to sit independently, stand with support, was able to feed herself and say "mum, dad and Nan". In March 2011 Ava's shunt blocked. fluid built up in her brain and misdiagnosis meant a delay in treatment . When Ava recovered from surgery we realised she had lost all the skills she had fought so hard to get and seizures were taking control of her life, making progress incredibly difficult . It took two years to stabilise Ava after this trauma but she started to fight back and we started to recognise the little girl we had had but in the summer of 2013, we learnt that Ava's left hip had dislocated. Her right hip was also compromised. Our dreams of seeing her stand again were shattered!

Ava was really struggling and so September 2013 we took Ava for a two week course of intensive rehabilitation at the Adeli medical centre in Slovakia. It was like nothing she had ever done before and there were moments where we worried if we had even done the right thing but within 48hours we could see a difference. The results were staggering. They had reduce the spasticity in her legs by over 50%! Her legs, that had been locked together for so long were able to open 8cm wide and she was able to wrap her legs around my waist for the first time in years! Her posture was amazing, awareness and responsiveness increased. It was like being given back the little girl we had lost years before

Ava returned to Adeli 5 times. ;Each trip brought new gifts but the travel was a Lot for all of us.

We are now in the enviable position of being able to access some home based therapy for Ava and she’s now under the incredible Neil Webster at Mini Wonders children’s physiotherapy and is having weekly physiotherapy at home, where she feels most confident. This therapy has become increasingly essential, as Ava developed severe scoliosis as puberty growth spurts hit and Aaron from the Great little OT practice joined our team back in 2019 and so far the postural care plans they’ve developed and regular therapy input has kept us away from surgery, something we were told would be impossible!

You are also funding one to one music therapy for Ava, with the wonderful Emily Grimes music therapy service. Music has always been a very magical gift and has been something that’s got through to Ava, even when she’s been desperately unwell, screaming in pain or traumatised by hospital procedures. It’s helped her communication skills immeasurably and enabled Ava to find her voice

Other ways in which your fundraising has helped has been to help us purchase specialist equipment for Ava such as specialist seating and a profile bed.

Your continued support is so very much appreciated. Ava wouldn’t be where she is today, without you.

Should we exceed the target amount (or if we do not raise enough funds, or if they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.