Help fund an Innowalk for Lilly
Donation protected
Hi, my name is Lilly and I am almost 6 years old. I live with my big sister Sofia (8) and Mum and Dad. My parents have decided to write this letter on my behalf as I cannot write or speak.
When I was 4 months old I was diagnosed with Congenital Bilateral cataracts and I had to undergo several major surgeries to remove my lenses at Great Ormond Street Hospital to save my vision. Since then I have been wearing both glasses and contact lenses (+24). On top of that, I have a nystagmus so my world is a little bit wobbly.
My family always make sure to bring the world to me as I cannot see beyond a meter. I totally rely on others in all ways all day.
As I grew older I didn't move or talk like my sister or other children and my parents were told that I have Global Developmental delay. Doctors are yet to give a specific name that covers all my difficulties. I have lots of different, very complex needs that don't properly fit into any overall diagnosis.
When I was 2 years old I had learnt to sit unaided with lots of help from Mum and Dad and therapists. I still cannot crawl or walk unaided as my legs are very weak and after a few steps I get extremely tired and refuse to carry on. I get frustrated and overloaded very easily due to my difficulty in understanding fully what is going on and not being able to talk.
Because I couldn't move enough on my own as other children would my hips slowly moved out of their sockets. When I was 3 years old I was diagnosed with Hip Dysplasia. I suffered with lots of pain up till this point and really struggled to stand or step as both of my hip bones were 50% dislocated out of their sockets. I
underwent a very complicated surgery of Bilateral femoral varus derotational hip osteotomies at Great Ormond Street Hospital (my second home). The surgery involved cutting the thighbone (femur) and re-positioning the ball of the femur in the hip socket. They had to use metal plates and screws, which were surgically removed 2 years later. I spent 2 months in a spica cast (from top to toe).The whole recovery process has taken us 3 years and we still have some way to go.
My parents are very worried because the doctors said my hips may pop out again if I don’t learn to use my leg muscles enough.
I started school when I was 5 and because of the surgeries and my difficulties it has taken me a long time to settle into this routine. My school is lovely and I have a team of great teachers and therapists to support me.
One of my physiotherapists recently came across INNOWALK. I was very lucky to have a trial at my school in March 2016. This magical and extraordinary equipment moves my legs in a walking motion.
For the first time in my life I was able to feel what it is like to walk without being too tired to do more than a few steps. I loved it! Everyone looked a bit worried at first but when they saw me smile they relaxed. I walked with the help of the INNOWALK and looked much like any other 6 year old would. I managed to “run” a whopping 600 meters (an equivalent of one and a half of a running truck) in 15 minutes. Seeing me do this made my Mum cry a bit as this was the first time she had ever seen me do anything like this.
I know this equipment will be hugely helpful to me. With my own strength I mostly sit, lay down or stand in a frame. I find it very difficult to use my muscles without lots of help from others but with INNOWALK I will be able to 'walk' longer distances, using my muscles and exercising independently. It will have a positive effect on my circulation and digestion. It will help my hip muscles work better and hopefully mean I won't have to have surgery for dislocation again.
It will also tire me out much like other children feel after running around a lot - which means I will sleep better and finally allow my parents a full night without me waking them up.
It will change my life.
Thank you for reading this and considering helping me with my dream to walk - lots of love, Lilly
Hello, this is Marta and Peter, Lilly's parents.
Most of us take the ability to walk for granted. Our Lilly needs all the help she can get and we would love to be able to provide her the opportunity of movement that the INNOWALK will provide. Any donation towards the cost of this equipment would be most gratefully received. It will mean the world to us.
Hi, my name is Michelle and I am Lilly's physiotherapist.
Lilly's parents are an amazing, hardworking couple who have been doing absolutely everything they possibly can to meet Lilly's complex needs. If we can collectively support this project for Lilly it will change their lives - I have no doubt about that, and the whole family will be eternally grateful.
When I was 4 months old I was diagnosed with Congenital Bilateral cataracts and I had to undergo several major surgeries to remove my lenses at Great Ormond Street Hospital to save my vision. Since then I have been wearing both glasses and contact lenses (+24). On top of that, I have a nystagmus so my world is a little bit wobbly.
My family always make sure to bring the world to me as I cannot see beyond a meter. I totally rely on others in all ways all day.
As I grew older I didn't move or talk like my sister or other children and my parents were told that I have Global Developmental delay. Doctors are yet to give a specific name that covers all my difficulties. I have lots of different, very complex needs that don't properly fit into any overall diagnosis.
When I was 2 years old I had learnt to sit unaided with lots of help from Mum and Dad and therapists. I still cannot crawl or walk unaided as my legs are very weak and after a few steps I get extremely tired and refuse to carry on. I get frustrated and overloaded very easily due to my difficulty in understanding fully what is going on and not being able to talk.
Because I couldn't move enough on my own as other children would my hips slowly moved out of their sockets. When I was 3 years old I was diagnosed with Hip Dysplasia. I suffered with lots of pain up till this point and really struggled to stand or step as both of my hip bones were 50% dislocated out of their sockets. I
underwent a very complicated surgery of Bilateral femoral varus derotational hip osteotomies at Great Ormond Street Hospital (my second home). The surgery involved cutting the thighbone (femur) and re-positioning the ball of the femur in the hip socket. They had to use metal plates and screws, which were surgically removed 2 years later. I spent 2 months in a spica cast (from top to toe).The whole recovery process has taken us 3 years and we still have some way to go.
My parents are very worried because the doctors said my hips may pop out again if I don’t learn to use my leg muscles enough.
I started school when I was 5 and because of the surgeries and my difficulties it has taken me a long time to settle into this routine. My school is lovely and I have a team of great teachers and therapists to support me.
One of my physiotherapists recently came across INNOWALK. I was very lucky to have a trial at my school in March 2016. This magical and extraordinary equipment moves my legs in a walking motion.
For the first time in my life I was able to feel what it is like to walk without being too tired to do more than a few steps. I loved it! Everyone looked a bit worried at first but when they saw me smile they relaxed. I walked with the help of the INNOWALK and looked much like any other 6 year old would. I managed to “run” a whopping 600 meters (an equivalent of one and a half of a running truck) in 15 minutes. Seeing me do this made my Mum cry a bit as this was the first time she had ever seen me do anything like this.
I know this equipment will be hugely helpful to me. With my own strength I mostly sit, lay down or stand in a frame. I find it very difficult to use my muscles without lots of help from others but with INNOWALK I will be able to 'walk' longer distances, using my muscles and exercising independently. It will have a positive effect on my circulation and digestion. It will help my hip muscles work better and hopefully mean I won't have to have surgery for dislocation again.
It will also tire me out much like other children feel after running around a lot - which means I will sleep better and finally allow my parents a full night without me waking them up.
It will change my life.
Thank you for reading this and considering helping me with my dream to walk - lots of love, Lilly
Hello, this is Marta and Peter, Lilly's parents.
Most of us take the ability to walk for granted. Our Lilly needs all the help she can get and we would love to be able to provide her the opportunity of movement that the INNOWALK will provide. Any donation towards the cost of this equipment would be most gratefully received. It will mean the world to us.
Hi, my name is Michelle and I am Lilly's physiotherapist.
Lilly's parents are an amazing, hardworking couple who have been doing absolutely everything they possibly can to meet Lilly's complex needs. If we can collectively support this project for Lilly it will change their lives - I have no doubt about that, and the whole family will be eternally grateful.
Organizer
Michelle Burns
Organizer
