Amber Lilly's Op
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Our names are Susan and Russell. Our daughter Amber is 8 years old. She was born at 24 weeks with significant disabilities, along with her twin sister Ellie who passed away shortly after she was born.
She was in hospital for the first seven months of her life; she have overcome an incredible number of obstacles. These have included being incubator dependent for the first six months of her life, relying on C-PAP to breathe. When she was six weeks old, she had a heart operation, PDA.
At birth, she was also diagnosed with water on the brain, known as hydrocephalus. Because of this, she has a permanent shunt in place to help her stay alive and release the fluid from her brain. She also has difficulty with her vision, hearing and teeth due to her premature birth.
Early in her school life, Amber was diagnosed with cerebral palsy. As you may or may not know, cerebral palsy leads to muscle stiffness and spasms, which cause an incredible amount of pain for the sufferer. It also leads to poor mobility and movement, which is one of Amber's most significant disabilities.
Our daughter is reliant on around the clock care as the nature of her disabilities means that she requires constant support, both in school and at home. Whilst in school, Amber relies on several fantastic adults to assist her in learning, talking and being able to access her mainstream school. These adults also help her with attending to her personal care and hygiene; Amber has significant weakness in her left side which means that she cannot lead any aspect of her life independently.
At home, Amber is entirely dependent on us as her parents. We have fought hard to ensure that she has surroundings which keep her safe at all times. This has included adapting the vast majority of our house, to ensure Amber's safety and to ensure that where possible, she can move around in her wheelchair or K-walker. This has been entirely self funded.
As Amber grows up, for her to be able to lead an independent life is our number one priority. In order for Amber to begin to gain a level of independence, an improved quality of life and a life without pain, it is vital that Amber has an operation which could change the rest of her life for the better.
Selective Dorsal Rhizotomy is a life changing opportunity. The operation which involves opening up the bones of the lower spine to operate on the nerves can permanently reduce the stiffness of children's muscles, enabling them to improve movement, balance and posture, as well as reducing pain and discomfort.
The operation in simple terms cuts the dead nerve endings away from the spine to allow the ones that do the work to peform more effectively. This will improve Amber's posture and will enable her to get her feet flat to the floor which could help her walk without any aids.
Dr Park in Missouri has performed this operation on over 2000 patients with a 100% success rate. Dr Kristian Aquilina (Amber's paediatrician neurosurgeon) has worked closely with Dr Park in St Louis. He has extensive experience in these neurosurgical procedures.
SDR is not a cure for cerebral palsy, but with intense physio, it could give Amber a better quality of life and improve her mobility and independence.
Amber has been waiting an incredibly long while for the SDR operation.
Unfortunately, in December 2015, we were notified that the NHS funding programe for the SDR operation will be ending in March 2016. We have been informed that Amber is 6th on the NHS waiting list for this operation, meaning that she will not be able to have this life changing procedure before funding ends. At the moment, funding may begin again in July 2017, by which time it will be too late for her. There is no guarantee that it will be funded for her even then.
If we reach our goal of £30000, Amber will be able to have this life changing operation as early as May 2016. The operation will cost £25000, with after care costing anything between £5000-£10000, depending on local resources and the rate of recovery of our very determined little girl.
The operation would change everything. We are aware, as Amber gets older, how difficult her life will be without us around. This could be the last chance for our daughter to be able to walk and move independently for the first time in her life, and for the rest of her life. It would significantly improve her quality of life.
If you choose to help, we will be incredibly grateful for any amount that you can contribute. Every penny and every pound will get us closer to Amber leading a pain free and increasingly independent life.
Thank you for all your support so far and all your donations have been amazing but now sorry we need more for physio as NHS do not fund this.
We reached our goal for the operation and part fund physio but we are asking for help again so please share and share Ambers operation was such a success and physio is amazing just 6 weeks after her operation she is up and walking she is a star.
we need 6 months more physio so again please share Ambers site thank you from the bottom of our hearts xx
She was in hospital for the first seven months of her life; she have overcome an incredible number of obstacles. These have included being incubator dependent for the first six months of her life, relying on C-PAP to breathe. When she was six weeks old, she had a heart operation, PDA.
At birth, she was also diagnosed with water on the brain, known as hydrocephalus. Because of this, she has a permanent shunt in place to help her stay alive and release the fluid from her brain. She also has difficulty with her vision, hearing and teeth due to her premature birth.
Early in her school life, Amber was diagnosed with cerebral palsy. As you may or may not know, cerebral palsy leads to muscle stiffness and spasms, which cause an incredible amount of pain for the sufferer. It also leads to poor mobility and movement, which is one of Amber's most significant disabilities.
Our daughter is reliant on around the clock care as the nature of her disabilities means that she requires constant support, both in school and at home. Whilst in school, Amber relies on several fantastic adults to assist her in learning, talking and being able to access her mainstream school. These adults also help her with attending to her personal care and hygiene; Amber has significant weakness in her left side which means that she cannot lead any aspect of her life independently.
At home, Amber is entirely dependent on us as her parents. We have fought hard to ensure that she has surroundings which keep her safe at all times. This has included adapting the vast majority of our house, to ensure Amber's safety and to ensure that where possible, she can move around in her wheelchair or K-walker. This has been entirely self funded.
As Amber grows up, for her to be able to lead an independent life is our number one priority. In order for Amber to begin to gain a level of independence, an improved quality of life and a life without pain, it is vital that Amber has an operation which could change the rest of her life for the better.
Selective Dorsal Rhizotomy is a life changing opportunity. The operation which involves opening up the bones of the lower spine to operate on the nerves can permanently reduce the stiffness of children's muscles, enabling them to improve movement, balance and posture, as well as reducing pain and discomfort.
The operation in simple terms cuts the dead nerve endings away from the spine to allow the ones that do the work to peform more effectively. This will improve Amber's posture and will enable her to get her feet flat to the floor which could help her walk without any aids.
Dr Park in Missouri has performed this operation on over 2000 patients with a 100% success rate. Dr Kristian Aquilina (Amber's paediatrician neurosurgeon) has worked closely with Dr Park in St Louis. He has extensive experience in these neurosurgical procedures.
SDR is not a cure for cerebral palsy, but with intense physio, it could give Amber a better quality of life and improve her mobility and independence.
Amber has been waiting an incredibly long while for the SDR operation.
Unfortunately, in December 2015, we were notified that the NHS funding programe for the SDR operation will be ending in March 2016. We have been informed that Amber is 6th on the NHS waiting list for this operation, meaning that she will not be able to have this life changing procedure before funding ends. At the moment, funding may begin again in July 2017, by which time it will be too late for her. There is no guarantee that it will be funded for her even then.
If we reach our goal of £30000, Amber will be able to have this life changing operation as early as May 2016. The operation will cost £25000, with after care costing anything between £5000-£10000, depending on local resources and the rate of recovery of our very determined little girl.
The operation would change everything. We are aware, as Amber gets older, how difficult her life will be without us around. This could be the last chance for our daughter to be able to walk and move independently for the first time in her life, and for the rest of her life. It would significantly improve her quality of life.
If you choose to help, we will be incredibly grateful for any amount that you can contribute. Every penny and every pound will get us closer to Amber leading a pain free and increasingly independent life.
Thank you for all your support so far and all your donations have been amazing but now sorry we need more for physio as NHS do not fund this.
We reached our goal for the operation and part fund physio but we are asking for help again so please share and share Ambers operation was such a success and physio is amazing just 6 weeks after her operation she is up and walking she is a star.
we need 6 months more physio so again please share Ambers site thank you from the bottom of our hearts xx
Organisateur
Russell Triggs
Organisateur