About Curtis
Curtis was born at 25 weeks gestation and spent the first 5 months of his life in hospital. He is now 8 years old and is profound deaf and has cerebral palsy.
Curtis has had 2 cochlear implants which enable him to hear which has helped him in many ways. Unfortunately due to his cerebral palsy Curtis cannot walk unaided and has to use a walking frame to walk short distances and a wheelchair for longer distances. In smaller environments where a walking frame or wheelchair are not viable due to space restraints, such as at home, Curtis either crawls as this is his fastest way of currently getting from A to B or uses furniture as support.
Curtis often tries to walk as he wants to copy others such as his younger brother Connor who is 4 and younger sister Kelsey who is 2. At present he can manage only one of two steps before falling. This is because Curtis’ cerebral palsy has caused spastic diplegia which is muscle stiffness in the legs which usually means he cannot put his feet flat and he always has very tight muscles that cause him discomfort and pain especially when you try to straighten his legs.
Curtis undergoes regular physio and has to use the specialist equipment such as standing frames and special seats while at school to try and help counteract the spastic diplegia. He has also gone through long periods of having to wear splints to try and straighten his legs and put his feet flat. These are uncomfortable to wear and over use can stunt the growth of the leg muscles.
Recently it was recommended to us to visit a neurosurgeon in Frenchay Hospital in Bristol called Kristian Aquilina. Dr Aquilina has performed a pioneering technique in the United Kingdom called Selective Dorsal Rhizotomy (SDR). This technique was previously very limited in the UK and most families choosing this option would travel to America to have the procedure done. The procedure involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord. The complicated procedure reduces spasticity and it becomes easier for patients to increase strength with therapy and exercise. Our ultimate hope is that Curtis could receive this operation and be able to walk unaided and then onto things such as playing football and other games with his brother and sister.
Currently this procedure is not automatically awarded on the NHS as funding is not always provided and we have been told to start fundraising as the operation being funded is very unlikely and there is a substantial cost for private physio for 3 days a week for 6-12 months after the operation is performed. There is also no guarantee that the operation will be performed in the UK for Curtis which would mean he too would need to travel to America for the operation.
We have a target of £60,000 to raise as a fundraising total.
Should the money be no longer needed by Curtis or the total needed is exceeded then we will look to give the money to a child with similar needs or to a charity.
This truly is a life changing opportunity for Curtis as it would give him the chance to walk which we feared would be impossible for him. It will also gives him a better chance of independence as he gets older.
Thank you for taking the time to read this and thank you for your help.
Curtis has had 2 cochlear implants which enable him to hear which has helped him in many ways. Unfortunately due to his cerebral palsy Curtis cannot walk unaided and has to use a walking frame to walk short distances and a wheelchair for longer distances. In smaller environments where a walking frame or wheelchair are not viable due to space restraints, such as at home, Curtis either crawls as this is his fastest way of currently getting from A to B or uses furniture as support.
Curtis often tries to walk as he wants to copy others such as his younger brother Connor who is 4 and younger sister Kelsey who is 2. At present he can manage only one of two steps before falling. This is because Curtis’ cerebral palsy has caused spastic diplegia which is muscle stiffness in the legs which usually means he cannot put his feet flat and he always has very tight muscles that cause him discomfort and pain especially when you try to straighten his legs.
Curtis undergoes regular physio and has to use the specialist equipment such as standing frames and special seats while at school to try and help counteract the spastic diplegia. He has also gone through long periods of having to wear splints to try and straighten his legs and put his feet flat. These are uncomfortable to wear and over use can stunt the growth of the leg muscles.
Recently it was recommended to us to visit a neurosurgeon in Frenchay Hospital in Bristol called Kristian Aquilina. Dr Aquilina has performed a pioneering technique in the United Kingdom called Selective Dorsal Rhizotomy (SDR). This technique was previously very limited in the UK and most families choosing this option would travel to America to have the procedure done. The procedure involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord. The complicated procedure reduces spasticity and it becomes easier for patients to increase strength with therapy and exercise. Our ultimate hope is that Curtis could receive this operation and be able to walk unaided and then onto things such as playing football and other games with his brother and sister.
Currently this procedure is not automatically awarded on the NHS as funding is not always provided and we have been told to start fundraising as the operation being funded is very unlikely and there is a substantial cost for private physio for 3 days a week for 6-12 months after the operation is performed. There is also no guarantee that the operation will be performed in the UK for Curtis which would mean he too would need to travel to America for the operation.
We have a target of £60,000 to raise as a fundraising total.
Should the money be no longer needed by Curtis or the total needed is exceeded then we will look to give the money to a child with similar needs or to a charity.
This truly is a life changing opportunity for Curtis as it would give him the chance to walk which we feared would be impossible for him. It will also gives him a better chance of independence as he gets older.
Thank you for taking the time to read this and thank you for your help.