Fight 4 Niamh
Donation protected
PLEASE HELP US to get our deaf and disabled daughter the access to education she’s being denied by her local authority.
Every child deserves an education and every family is deserving of help from the social care system. We are at our wits' end after years of fighting for our profoundly deaf daughter who also has a heart condition, autism and other disabilities due to Noonan Syndrome. Help us fund the right level of support that is currently being denied to our bright, funny, loving little girl, Niamh.
NIAMH'S STORY
Niamh was born on the 26th December, 2007 near Hastings and began her fight from day one. She spent the first week of her life in an incubator and by week six we were told the devastating news that she had a life-threatening heart defect and was also suffering from severe hearing loss. Following genetics testing at Guys St Thomas' in London Niamh was diagnosed with Noonan Syndrome, which was not only the cause of her existing conditions but would also result in our daughter developing learning difficulties and autism as she got older.
By the age of four Niamh's hearing had deteriorated to the point where her hearing aids were no longer sufficient. She underwent a nine-hour surgery to be fitted with bi-lateral cochlear implants so she could hear. However due to medical negligence one of these implants failed. Niamh also began showing more and more signs of autism (a part of Noonan Syndrome) and it became harder to manage her disabilities.
Niamh recovering from surgery after her first cochlear implant operation.
At her primary school she was being bullied and had no friends. It became clear that the education setting was not meeting her complex needs. Niamh was isolated to the hearing support unit all day every day, through no fault of her own. Her confidence was extremely low and she became withdrawn. After a battle against the local authority we managed to get her moved to a brilliant school for the deaf in Brighton that provides the right level of support and care she needed and deserved.
Great news!....sadly not. Since September 2018, the local authority has refused to fund Niamh as a day/night resident and as a result forces her into travelling up to three hours a day to access her lessons. No child, let alone one with disabilities, should have to endure what our daughter is going through and so we ask for your help.
Please help us to help Niamh......help our brave, wonderful little girl fulfil her potential and live the best life she can. Help her access the best provision and education at her school in Brighton and not be denied by a failing social care system.
Niamh has fought all her life. We ask that you fight alongside her and donate as much as you can.
Our warmest thanks,
Paul, Caroline and Niamh Jackson x
If you'd like any further information on hearing loss, Noonan Syndrome or ASD, please click on the links below.
Noonan Syndrome
NDCS
Autism
Every child deserves an education and every family is deserving of help from the social care system. We are at our wits' end after years of fighting for our profoundly deaf daughter who also has a heart condition, autism and other disabilities due to Noonan Syndrome. Help us fund the right level of support that is currently being denied to our bright, funny, loving little girl, Niamh.
NIAMH'S STORY
Niamh was born on the 26th December, 2007 near Hastings and began her fight from day one. She spent the first week of her life in an incubator and by week six we were told the devastating news that she had a life-threatening heart defect and was also suffering from severe hearing loss. Following genetics testing at Guys St Thomas' in London Niamh was diagnosed with Noonan Syndrome, which was not only the cause of her existing conditions but would also result in our daughter developing learning difficulties and autism as she got older.
By the age of four Niamh's hearing had deteriorated to the point where her hearing aids were no longer sufficient. She underwent a nine-hour surgery to be fitted with bi-lateral cochlear implants so she could hear. However due to medical negligence one of these implants failed. Niamh also began showing more and more signs of autism (a part of Noonan Syndrome) and it became harder to manage her disabilities.
Niamh recovering from surgery after her first cochlear implant operation.
At her primary school she was being bullied and had no friends. It became clear that the education setting was not meeting her complex needs. Niamh was isolated to the hearing support unit all day every day, through no fault of her own. Her confidence was extremely low and she became withdrawn. After a battle against the local authority we managed to get her moved to a brilliant school for the deaf in Brighton that provides the right level of support and care she needed and deserved.
Great news!....sadly not. Since September 2018, the local authority has refused to fund Niamh as a day/night resident and as a result forces her into travelling up to three hours a day to access her lessons. No child, let alone one with disabilities, should have to endure what our daughter is going through and so we ask for your help.
Please help us to help Niamh......help our brave, wonderful little girl fulfil her potential and live the best life she can. Help her access the best provision and education at her school in Brighton and not be denied by a failing social care system.
Niamh has fought all her life. We ask that you fight alongside her and donate as much as you can.
Our warmest thanks,
Paul, Caroline and Niamh Jackson x
If you'd like any further information on hearing loss, Noonan Syndrome or ASD, please click on the links below.
Noonan Syndrome
NDCS
Autism
Organiser
Paul Jackson
Organiser
