Joanne Evans
Ava's Walking Wish
Fundraising for Tree of Hope
Story
My name is Ava and I am 3 years old. I live in Prestatyn, North Wales with my Mummy, Daddy and little sister Scarlett.
I was born on 6th February 2012, 9 weeks early and weighed a tiny 3lb 12oz. I had to spend 5 weeks in Special Care Baby Unit receiving oxygen and being fed through a tube until I learnt to do it myself.
My Mummy and Daddy started getting worried that I wasn't meeting my gross motor skill milestones, I couldn't crawl until I was 20 months old and I still can't walk. I had lots of tests and visited lots of Doctors and then on 2nd April 2014 my Paediatrician told Mummy and Daddy I had Spastic Diplegic Cerebral Palsy. This was caused by my premature birth and means my legs are very stiff and this causes me a lot of discomfort, I also find it difficult to flatten my feet. I find every day activities very difficult and my knees hurt from always crawling, I have no core strength to stand up on my own. I wear splints and I am learning to walk with a Kaye Walker. I have to do daily physio to help with relieving the tightness (spasticity) in my legs and feet, but as I get older the tightness will become worse.
I am a very bright and chatty little girl and I have lots of friends and with your help I can have a better future. There is a life changing operation called SDR (Selective Dorsal Rhizotomy) that I could have in St Louis Children's Hospital, USA, which would be carried out by Dr TS Park (who Mummy and Daddy say is the best in the world).
The SDR operation will permanently remove all the spasticity in my legs and help me build muscle so that I can learn to walk, improve my posture and gain flat feet so hopefully one day I can run around with my sister, dance with my friends and play football with my Daddy.
I also need another operation on my heel cords when I am there. As I cannot flatten my feet, my heel cords are very tight so when I have SDR there will not be enough length in my heel cords to let my feet go flat. I will have this operation (tendon lengthening) 2 weeks after the SDR.
This operation is not funded by the NHS in the UK and also the criteria is different from that in the USA. We need to raise approximately £89,000 to pay for the 2 operations, travel to USA and accomodation (I would need to stay there for at least a month), and then I would need to pay for intensive physio and equipment in the UK for at least 2 years post op, we also would need to make space for all of Ava's equipment by building a physio cabin for sole use of Ava's physio. Mummy and Daddy and our family and friends will be doing a lot of fundraising events to help me.
I know I have a long road ahead of me, but I am a very determined little girl and hopefully with your support I could be one step closer to reaching my goal.
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.
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
You can even Donate via Text Message by send a text to 70070 with the code AVAA93 and the amount of your donation.
eg:
70070
AVAA93 £5
Thank you
I was born on 6th February 2012, 9 weeks early and weighed a tiny 3lb 12oz. I had to spend 5 weeks in Special Care Baby Unit receiving oxygen and being fed through a tube until I learnt to do it myself.
My Mummy and Daddy started getting worried that I wasn't meeting my gross motor skill milestones, I couldn't crawl until I was 20 months old and I still can't walk. I had lots of tests and visited lots of Doctors and then on 2nd April 2014 my Paediatrician told Mummy and Daddy I had Spastic Diplegic Cerebral Palsy. This was caused by my premature birth and means my legs are very stiff and this causes me a lot of discomfort, I also find it difficult to flatten my feet. I find every day activities very difficult and my knees hurt from always crawling, I have no core strength to stand up on my own. I wear splints and I am learning to walk with a Kaye Walker. I have to do daily physio to help with relieving the tightness (spasticity) in my legs and feet, but as I get older the tightness will become worse.
I am a very bright and chatty little girl and I have lots of friends and with your help I can have a better future. There is a life changing operation called SDR (Selective Dorsal Rhizotomy) that I could have in St Louis Children's Hospital, USA, which would be carried out by Dr TS Park (who Mummy and Daddy say is the best in the world).
The SDR operation will permanently remove all the spasticity in my legs and help me build muscle so that I can learn to walk, improve my posture and gain flat feet so hopefully one day I can run around with my sister, dance with my friends and play football with my Daddy.
I also need another operation on my heel cords when I am there. As I cannot flatten my feet, my heel cords are very tight so when I have SDR there will not be enough length in my heel cords to let my feet go flat. I will have this operation (tendon lengthening) 2 weeks after the SDR.
This operation is not funded by the NHS in the UK and also the criteria is different from that in the USA. We need to raise approximately £89,000 to pay for the 2 operations, travel to USA and accomodation (I would need to stay there for at least a month), and then I would need to pay for intensive physio and equipment in the UK for at least 2 years post op, we also would need to make space for all of Ava's equipment by building a physio cabin for sole use of Ava's physio. Mummy and Daddy and our family and friends will be doing a lot of fundraising events to help me.
I know I have a long road ahead of me, but I am a very determined little girl and hopefully with your support I could be one step closer to reaching my goal.
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.
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
You can even Donate via Text Message by send a text to 70070 with the code AVAA93 and the amount of your donation.
eg:
70070
AVAA93 £5
Thank you