Niamh's Rett Syndrome Challenge
Donation protected
Niamh, has Rett Syndrome, she can't talk, walk, or use her hands; she will need full-time care all her life.
Rett Syndrome (RTT) is a serious lifelong neurological disorder, diagnosed almost exclusively in girls, with symptoms typically appearing in toddlerhood.
Niamh is four years old yet she can't pick anything up, she can’t grasp objects or hold anything for long. Her wonderful family help her eat her meals, drink, play, get out of bed and get dressed. Absolutely everything. Niamh can’t do anything unaided.
She and her mother live together on a farm on Exmoor close to my sister (Niamh's grandmother). Specialist support is very limited in their area so they are having to figure out how to provide Niamh with all she needs to give her the best quality of life possible. This is very expensive and why we are here asking you for help.
While Niamh can't speak she and her family chat lots. Nothing wordy but there is lots of giggling, laughter, gobbledygook and grunts. If you know Niamh you learn to translate it all pretty quickly. Through the generous support of others Niamh has been given an Eye Gaze device. This device enables locked-in users to communicate with the world via accurate eye tracking and software. The issue is that Niamh and her family need expert training to be able to use it.
Niamh goes to a “mainstream” nursery three days a week (she loves it and has made lots of friends) but her family has to pay for a teaching assistant to be with her. Without this one-to-one support and the ability to use an Eye Gaze it is unlikely that Niamh will be able to continue at school when her friends go to primary school next September.
Niamh struggles to walk but she is able to spend time on a special trike which is important for her physical well-being. Further regular physical therapy is essential and it has been identified that regular use of a bio electro-magnetic energy regulation device (BEMER) would be hugely beneficial.
We are here asking for support to pay for expert training for her Eye Gaze (approx £4,000) and to purchase a BEMER device (£3,500).
We are also asking for help to pay for on-going teaching assistance to allow Niamh to remain in school (£7,500).
To find out more about Niamh please visit the Niamh&Me blog and follow @NiamhandMe on Instagram.
If you have questions or would like more information please get in touch we'd love to hear from you.
Best wishes
Judi & the Niamh Challenge Team
Rett Syndrome (RTT) is a serious lifelong neurological disorder, diagnosed almost exclusively in girls, with symptoms typically appearing in toddlerhood.
Niamh is four years old yet she can't pick anything up, she can’t grasp objects or hold anything for long. Her wonderful family help her eat her meals, drink, play, get out of bed and get dressed. Absolutely everything. Niamh can’t do anything unaided.
She and her mother live together on a farm on Exmoor close to my sister (Niamh's grandmother). Specialist support is very limited in their area so they are having to figure out how to provide Niamh with all she needs to give her the best quality of life possible. This is very expensive and why we are here asking you for help.
While Niamh can't speak she and her family chat lots. Nothing wordy but there is lots of giggling, laughter, gobbledygook and grunts. If you know Niamh you learn to translate it all pretty quickly. Through the generous support of others Niamh has been given an Eye Gaze device. This device enables locked-in users to communicate with the world via accurate eye tracking and software. The issue is that Niamh and her family need expert training to be able to use it.
Niamh goes to a “mainstream” nursery three days a week (she loves it and has made lots of friends) but her family has to pay for a teaching assistant to be with her. Without this one-to-one support and the ability to use an Eye Gaze it is unlikely that Niamh will be able to continue at school when her friends go to primary school next September.
Niamh struggles to walk but she is able to spend time on a special trike which is important for her physical well-being. Further regular physical therapy is essential and it has been identified that regular use of a bio electro-magnetic energy regulation device (BEMER) would be hugely beneficial.
We are here asking for support to pay for expert training for her Eye Gaze (approx £4,000) and to purchase a BEMER device (£3,500).
We are also asking for help to pay for on-going teaching assistance to allow Niamh to remain in school (£7,500).
To find out more about Niamh please visit the Niamh&Me blog and follow @NiamhandMe on Instagram.
If you have questions or would like more information please get in touch we'd love to hear from you.
Best wishes
Judi & the Niamh Challenge Team
Co-organizers (3)
Judi Blakeburn
Organizer
England
Emma Macdonald
Beneficiary
Paul Jobin
Co-organizer