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Hi my name is Maia and I’m three and a half ,I’m just like you however I have Angelman syndrome.
This is a rare genetic condition (1 in 20000) you probably haven’t heard of, basically part of my chromosome 15 got muddled up and is missing. I have also have had really bad time with epilepsy since March 2021 I have been admitted to hospital for 4 weeks in total for rescue medication and I am now trying out daily medications to try and stop me from having seizures everyday. But I’m still fighting and smiling im tuff as they come.
The doctors have said I might never talk or walk and will always be behind developmentally, but I’m going to prove them wrong!
With a lot help from physiotherapy, hydrotherapy, speech therapy and occupational therapy I’m positive I can achieve all my dreams.
My mummy and daddy are trying very hard to fund the treatment I need and have to do this privately as the NHS just can’t offer enough at the moment.
I could do with a little help as it’s very expensive, for example an hours worth of private treatment can cost up to £100 pounds, and equipment can reach thousands!
Also there is some amazing research going on in America into gene therapy, where they may be able to replace my missing bit. If this was to become available to me in the near future and I’d hate to be at the back of the queue thank you for reading love Maia xxx
wrote on behalf of me, by mummy and daddy
This is a rare genetic condition (1 in 20000) you probably haven’t heard of, basically part of my chromosome 15 got muddled up and is missing. I have also have had really bad time with epilepsy since March 2021 I have been admitted to hospital for 4 weeks in total for rescue medication and I am now trying out daily medications to try and stop me from having seizures everyday. But I’m still fighting and smiling im tuff as they come.
The doctors have said I might never talk or walk and will always be behind developmentally, but I’m going to prove them wrong!
With a lot help from physiotherapy, hydrotherapy, speech therapy and occupational therapy I’m positive I can achieve all my dreams.
My mummy and daddy are trying very hard to fund the treatment I need and have to do this privately as the NHS just can’t offer enough at the moment.
I could do with a little help as it’s very expensive, for example an hours worth of private treatment can cost up to £100 pounds, and equipment can reach thousands!
Also there is some amazing research going on in America into gene therapy, where they may be able to replace my missing bit. If this was to become available to me in the near future and I’d hate to be at the back of the queue thank you for reading love Maia xxx
wrote on behalf of me, by mummy and daddy