Standing Tall With Georgia
Donation protected
This is us
My name is Lisa Strudwick, I am married to Jeff and we have two children Georgia who is 16 and Bobby who is 11. We have lived in the Purley and Coulsdon area all of our lives.
Standing Tall With Georgia
We are raising money to buy an ‘Innowalk’ exercise machine for our daughter Georgia.
An ‘Innowalk’ is a special exercise machine that helps disabled children with mobility issues exercise standing upright. Maintaining muscle strength is vital to overall well-being, it helps to maintain muscles and helps to avoid dystonia - a movement disorder in which a person's muscles contract uncontrollably. Maintaining upright strength also helps to avoid respiratory issues brought on by coughs and colds.
The Back Story
Georgia was born 2 weeks premature in 2004; she did all the normal things a baby would do. However, just before her first birthday, Georgia began to have seizures that gradually became more and more severe. It was around this time that Georgia stopped reaching her normal childhood milestones.
Paediatricians at St George’s Hospital in South London decided to investigate the cause of these seizures and it was just before her second birthday that our beautiful girl was diagnosed with Rett syndrome. Rett Syndrome is a neurological disorder that predominantly affects girls. Symptoms include impairments in language and coordination and repetitive movements. Those affected often have slower growth, difficulty walking, and a smaller head size. Very quickly, Rett Syndrome stole Georgia’s ability to walk, talk and prevented her from standing by herself. Her seizures became more frequent and more severe, and she began to develop issues with her breathing.
In 2008, I became very poorly and spent a large portion of the year in and out of hospital and at one stage; I was close to losing my own life. I underwent huge complex surgery as a result. I was diagnosed with Crohn's disease.
In 2009 our son, Bobby, was born.
Just after this, Georgia began to suffer from chest infections which her immune system struggled to deal with. As the infections worsened Georgia spent more and more time in hospital ventilated in intensive care to assist her with her breathing. Of course, I stayed with her in hospital every time leaving Bobby at home with Jeff and family members.
In the space of the next four years, Georgia had six severe episodes that ended in hospitalisation. She required assistance breathing from a ventilator in intensive care in order to clear her chest. Every subsequent hospital visit became a longer stay each time as Georgia’s immune system struggled to fight the infections, each one leaving her weakened to the onslaught of the next.
In 2014, Georgia was rushed into hospital yet again, this time though we were told to prepare for the worst; Georgia had contracted chicken pox, however, instead of the rash and blisters the infection was attacking her internally. The next 48 hours were extremely critical.
Miraculously Georgia fought this and managed to pull through once more. Jeff and I were, and still are, amazed at the strength of character of our daughter who refuses to let go.
We became aware of a physio programme being offered by Freddie Farmer a unique therapy centre for children affected by mobility issues in Bromley, which soon became our second home and our second family.
The intense programme, which we had to fund ourselves, enabled Georgia to build her strength up. Georgia attended every eight weeks for two hours a day, two weeks at a time. Georgia’s determination, strength and fighting spirit were evident to everyone as she slowly became stronger.
Then, 3 years ago in 2018, our family suffered another setback as my husband, Jeff, suffered a severe heart attack. He was admitted to Kings College Hospital where he underwent surgery. It took almost a year for Jeff to rehabilitate and to return to his self-employed work.
Not long after this Georgia’s dystonia gradually became worse. Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body. Dystonia gradually took over much of Georgia’s body, leaving her twisted, contracted and in pain.
At the Evelina Hospital, London we met an amazing consultant, Dr Lumsden. He tried various medicines to try to control the dystonia. In 2019, Georgia suffered a cardiac arrest whilst at home. I never ever imagined having to resuscitate one of my children, however, that is exactly what I had to do and now Georgia was fighting for her life again.
Being the true warrior Georgia has become, she somehow managed to pull through once again. It was at this point Dr Lumsden decided that DBS brain surgery was the best route to try to help Georgia.
DBS is a ‘deep-brain’ surgical procedure in which electrodes are implanted into certain brain areas; these electrodes generate electrical impulses that control abnormal brain activity.
This type of surgery had never been performed on a Rett Syndrome girl before; however, after long consideration and consultation with Dr Lumsden, we decided to proceed.
Four weeks after her cardiac arrest Georgia underwent brain surgery and it was a huge success as it has changed her life and managed to control her dystonia. We owe so much to Dr Lumsden.
In early 2020, Georgia contracted sepsis and once again was being cared for in intensive care. She and I spent three months in hospital.
In late 2020, it became clear Georgia could no longer straighten one of her legs; Orthotic surgeons have confirmed one of Georgia’s knees has locked, both hamstrings are tight and surgery is just not an option.
For the last 5 years Georgia has been using a standing frame for all of the strength and conditioning exercise she does, she cannot use this any longer. Since she can no longer stand and exercise there has been a significant decline in her overall well-being and muscle strength.
Bobby is an extra-ordinary young man who has coped admirably with all that life has thrown at him. He rides well the considerable highs and lows we have lived through his whole life. However, Bobby needs support, he struggles with anxiety and has been unable to attend school for a number of months.
I am normally a resilient person but I will admit the last few months have been the toughest of my life. I care for Georgia at home 24/7, she does not attend a school and we no longer receive any nursing support at home. Covid has only added to the rollercoaster of loving a child who is clinically vulnerable. I have found myself in some very dark places as I have struggled to cope with the life I have been dealt. I did not know how to dig myself out of the hole, which is unusual for me but something triggered within me and somehow I picked myself up and dusted myself down.
The idea that we might be able to access an ‘Innowalk’ which Georgia trialled in 2015 to get ‘Georgia Standing Tall’ has given me a renewed focus. I contacted the manufacturer and asked if Georgia and I could trial it.
The day the equipment arrived was a very emotional day indeed. Georgia got in it and once again proved every one wrong as she was standing again. The absolute joy that being mobile and upright brought to Georgia that day only strengthened my resolve to figure out a way for her to access one.
Why the ‘Innowalk’?
This machine will not only allow Georgia to build her strength back up - it will save her life. Georgia needs all of the strength she is able to muster in order to fight when she becomes poorly. Standing up will aid Georgia in her annual fight against chest infections and stomach issues.
This piece of equipment will get her back to exercise; it will help build her muscle strength and help keep her upright. Being upright cannot be underestimated in her annual fight against respiratory illness that is a normal cold to you and me.
Just as important this will allow Georgia to have some sort of normality rather than just sitting in a chair 24/7 as this is no way to live.
The huge sticking point is that the Innowalk will cost us £24,000 that we just cannot afford.
Why fundraise?
There is very little financial support for families with disabled and clinically vulnerable children – in 2019 our local council withdrew support for overnight nursing care as we ‘no longer met’ the funding criteria. This really is the only way for us to provide Georgia with something she really needs. This equipment is not funded and there are no support centres we could attend where she could use it. We are extremely lucky to have so many friends and family that support us but this is a big ask.
As a family, we live on a knife-edge and now we just need a bit of help. I have raised just over £60,000 for various charities over the years by running marathons, jumping out of planes, doing tough events, and other charity events and I have never fundraised for Georgia, this is the first time we have ever asked.
Thank you so much for even taking the time to read our story, it would be wonderful if you are able to help us in anyway. Mostly though please, please share our story.
#standingtallwithgeorgia #STWG #rettsyndrome
My name is Lisa Strudwick, I am married to Jeff and we have two children Georgia who is 16 and Bobby who is 11. We have lived in the Purley and Coulsdon area all of our lives.
Standing Tall With Georgia
We are raising money to buy an ‘Innowalk’ exercise machine for our daughter Georgia.
An ‘Innowalk’ is a special exercise machine that helps disabled children with mobility issues exercise standing upright. Maintaining muscle strength is vital to overall well-being, it helps to maintain muscles and helps to avoid dystonia - a movement disorder in which a person's muscles contract uncontrollably. Maintaining upright strength also helps to avoid respiratory issues brought on by coughs and colds.
The Back Story
Georgia was born 2 weeks premature in 2004; she did all the normal things a baby would do. However, just before her first birthday, Georgia began to have seizures that gradually became more and more severe. It was around this time that Georgia stopped reaching her normal childhood milestones.
Paediatricians at St George’s Hospital in South London decided to investigate the cause of these seizures and it was just before her second birthday that our beautiful girl was diagnosed with Rett syndrome. Rett Syndrome is a neurological disorder that predominantly affects girls. Symptoms include impairments in language and coordination and repetitive movements. Those affected often have slower growth, difficulty walking, and a smaller head size. Very quickly, Rett Syndrome stole Georgia’s ability to walk, talk and prevented her from standing by herself. Her seizures became more frequent and more severe, and she began to develop issues with her breathing.
In 2008, I became very poorly and spent a large portion of the year in and out of hospital and at one stage; I was close to losing my own life. I underwent huge complex surgery as a result. I was diagnosed with Crohn's disease.
In 2009 our son, Bobby, was born.
Just after this, Georgia began to suffer from chest infections which her immune system struggled to deal with. As the infections worsened Georgia spent more and more time in hospital ventilated in intensive care to assist her with her breathing. Of course, I stayed with her in hospital every time leaving Bobby at home with Jeff and family members.
In the space of the next four years, Georgia had six severe episodes that ended in hospitalisation. She required assistance breathing from a ventilator in intensive care in order to clear her chest. Every subsequent hospital visit became a longer stay each time as Georgia’s immune system struggled to fight the infections, each one leaving her weakened to the onslaught of the next.
In 2014, Georgia was rushed into hospital yet again, this time though we were told to prepare for the worst; Georgia had contracted chicken pox, however, instead of the rash and blisters the infection was attacking her internally. The next 48 hours were extremely critical.
Miraculously Georgia fought this and managed to pull through once more. Jeff and I were, and still are, amazed at the strength of character of our daughter who refuses to let go.
We became aware of a physio programme being offered by Freddie Farmer a unique therapy centre for children affected by mobility issues in Bromley, which soon became our second home and our second family.
The intense programme, which we had to fund ourselves, enabled Georgia to build her strength up. Georgia attended every eight weeks for two hours a day, two weeks at a time. Georgia’s determination, strength and fighting spirit were evident to everyone as she slowly became stronger.
Then, 3 years ago in 2018, our family suffered another setback as my husband, Jeff, suffered a severe heart attack. He was admitted to Kings College Hospital where he underwent surgery. It took almost a year for Jeff to rehabilitate and to return to his self-employed work.
Not long after this Georgia’s dystonia gradually became worse. Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body. Dystonia gradually took over much of Georgia’s body, leaving her twisted, contracted and in pain.
At the Evelina Hospital, London we met an amazing consultant, Dr Lumsden. He tried various medicines to try to control the dystonia. In 2019, Georgia suffered a cardiac arrest whilst at home. I never ever imagined having to resuscitate one of my children, however, that is exactly what I had to do and now Georgia was fighting for her life again.
Being the true warrior Georgia has become, she somehow managed to pull through once again. It was at this point Dr Lumsden decided that DBS brain surgery was the best route to try to help Georgia.
DBS is a ‘deep-brain’ surgical procedure in which electrodes are implanted into certain brain areas; these electrodes generate electrical impulses that control abnormal brain activity.
This type of surgery had never been performed on a Rett Syndrome girl before; however, after long consideration and consultation with Dr Lumsden, we decided to proceed.
Four weeks after her cardiac arrest Georgia underwent brain surgery and it was a huge success as it has changed her life and managed to control her dystonia. We owe so much to Dr Lumsden.
In early 2020, Georgia contracted sepsis and once again was being cared for in intensive care. She and I spent three months in hospital.
In late 2020, it became clear Georgia could no longer straighten one of her legs; Orthotic surgeons have confirmed one of Georgia’s knees has locked, both hamstrings are tight and surgery is just not an option.
For the last 5 years Georgia has been using a standing frame for all of the strength and conditioning exercise she does, she cannot use this any longer. Since she can no longer stand and exercise there has been a significant decline in her overall well-being and muscle strength.
Bobby is an extra-ordinary young man who has coped admirably with all that life has thrown at him. He rides well the considerable highs and lows we have lived through his whole life. However, Bobby needs support, he struggles with anxiety and has been unable to attend school for a number of months.
I am normally a resilient person but I will admit the last few months have been the toughest of my life. I care for Georgia at home 24/7, she does not attend a school and we no longer receive any nursing support at home. Covid has only added to the rollercoaster of loving a child who is clinically vulnerable. I have found myself in some very dark places as I have struggled to cope with the life I have been dealt. I did not know how to dig myself out of the hole, which is unusual for me but something triggered within me and somehow I picked myself up and dusted myself down.
The idea that we might be able to access an ‘Innowalk’ which Georgia trialled in 2015 to get ‘Georgia Standing Tall’ has given me a renewed focus. I contacted the manufacturer and asked if Georgia and I could trial it.
The day the equipment arrived was a very emotional day indeed. Georgia got in it and once again proved every one wrong as she was standing again. The absolute joy that being mobile and upright brought to Georgia that day only strengthened my resolve to figure out a way for her to access one.
Why the ‘Innowalk’?
This machine will not only allow Georgia to build her strength back up - it will save her life. Georgia needs all of the strength she is able to muster in order to fight when she becomes poorly. Standing up will aid Georgia in her annual fight against chest infections and stomach issues.
This piece of equipment will get her back to exercise; it will help build her muscle strength and help keep her upright. Being upright cannot be underestimated in her annual fight against respiratory illness that is a normal cold to you and me.
Just as important this will allow Georgia to have some sort of normality rather than just sitting in a chair 24/7 as this is no way to live.
The huge sticking point is that the Innowalk will cost us £24,000 that we just cannot afford.
Why fundraise?
There is very little financial support for families with disabled and clinically vulnerable children – in 2019 our local council withdrew support for overnight nursing care as we ‘no longer met’ the funding criteria. This really is the only way for us to provide Georgia with something she really needs. This equipment is not funded and there are no support centres we could attend where she could use it. We are extremely lucky to have so many friends and family that support us but this is a big ask.
As a family, we live on a knife-edge and now we just need a bit of help. I have raised just over £60,000 for various charities over the years by running marathons, jumping out of planes, doing tough events, and other charity events and I have never fundraised for Georgia, this is the first time we have ever asked.
Thank you so much for even taking the time to read our story, it would be wonderful if you are able to help us in anyway. Mostly though please, please share our story.
#standingtallwithgeorgia #STWG #rettsyndrome
Organizer and beneficiary
Lisa Strudwick
Organizer
England
Lisa Strudwick
Beneficiary
