Raising money for Maisie to walk again
Donation protected
As some of you may know, Maisie was in and out of hospital during the months of June and July this year following Maisie complaining that she felt dizzy and her belly hurt after doing handstands. Maisie was admitted to hospital with stomach aches and dizziness and was diagnosed with an impacted colon and spent 48 hours on iv laxatives. The dizziness was unexplained.
When Maisie was discharged the first time, she was able to walk but was very unsteady and experienced uncontrollable spasms whilst she walked. Maisie then took a turn one weekend when she was unable to move from the neck down and spent a week in Southend hospital undergoing X-rays, CT scans, brain MRIs, blood test and various other observations. 9 consultants reviewed Maisie but a diagnosis could not be given.
Maisie was then urgently referred to the Great Ormond street hospital for children neurologist team where she was diagnosed with Functional Neurological Disorder (FND) and was discharged the same day despite not being able to walk. For those of you that don’t know, this is a disorder of the neurological system to send messages to parts of the body. FND is medically unexplained and medication cannot cure this disorder. Extensive physiotherapy and psychological therapy is required to retrain Maisie’s brain to send messages to her legs to walk again without experiencing spasms.
Unfortunately, the NHS physiotherapists and psychologist who have seen Maisie since her discharge are not experienced in FND and, instead of seeing improvements from the treatments, Maisie has rapidly declined. She’s unable to walk at all and can take a maximum of two footsteps to transfer from her wheelchair to bed or the toilet whilst her body uncontrollable spasms and she cries in pain. She is in a wheelchair all day and goes to school for 1 - 2 hours a day. We are trying to build her up to go for 3 - 4 hours a day, but she is too exhausted. She has recently experienced a decline in her ability to read.
We have had to buy ramps and disability aids for the house ourselves as the waiting lists on the NHS are too long, and are trying to buy Maisie a self propelled wheelchair to help with her frustrations and boost her independence. If Maisie continues to decline, we will also have to purchase a hoist which costs thousands.
Maisie’s neck has recently gone into a form of spasm which medication cannot release and cries in pain every day.
We are now desperately trying to raise funds for Maisie to see a private psychologist/therapist and for Maisie to start hydrotherapy. Maisie’s dad runs his own business so any time off to help care for Maisie is unpaid, and as many know, Maisie’s brother Tommy has autism so needs additional care. We are trying to raise funds to help pay for Maisie’s treatment as it’s hard to pay for this alone.
We have no idea how many sessions or how long it will take so any donations would be greatly appreciated.
For anybody who wants to read more on FND, please see the links below.
https://www.fndaction.org.uk
https://fndhope.org
Thank you
When Maisie was discharged the first time, she was able to walk but was very unsteady and experienced uncontrollable spasms whilst she walked. Maisie then took a turn one weekend when she was unable to move from the neck down and spent a week in Southend hospital undergoing X-rays, CT scans, brain MRIs, blood test and various other observations. 9 consultants reviewed Maisie but a diagnosis could not be given.
Maisie was then urgently referred to the Great Ormond street hospital for children neurologist team where she was diagnosed with Functional Neurological Disorder (FND) and was discharged the same day despite not being able to walk. For those of you that don’t know, this is a disorder of the neurological system to send messages to parts of the body. FND is medically unexplained and medication cannot cure this disorder. Extensive physiotherapy and psychological therapy is required to retrain Maisie’s brain to send messages to her legs to walk again without experiencing spasms.
Unfortunately, the NHS physiotherapists and psychologist who have seen Maisie since her discharge are not experienced in FND and, instead of seeing improvements from the treatments, Maisie has rapidly declined. She’s unable to walk at all and can take a maximum of two footsteps to transfer from her wheelchair to bed or the toilet whilst her body uncontrollable spasms and she cries in pain. She is in a wheelchair all day and goes to school for 1 - 2 hours a day. We are trying to build her up to go for 3 - 4 hours a day, but she is too exhausted. She has recently experienced a decline in her ability to read.
We have had to buy ramps and disability aids for the house ourselves as the waiting lists on the NHS are too long, and are trying to buy Maisie a self propelled wheelchair to help with her frustrations and boost her independence. If Maisie continues to decline, we will also have to purchase a hoist which costs thousands.
Maisie’s neck has recently gone into a form of spasm which medication cannot release and cries in pain every day.
We are now desperately trying to raise funds for Maisie to see a private psychologist/therapist and for Maisie to start hydrotherapy. Maisie’s dad runs his own business so any time off to help care for Maisie is unpaid, and as many know, Maisie’s brother Tommy has autism so needs additional care. We are trying to raise funds to help pay for Maisie’s treatment as it’s hard to pay for this alone.
We have no idea how many sessions or how long it will take so any donations would be greatly appreciated.
For anybody who wants to read more on FND, please see the links below.
https://www.fndaction.org.uk
https://fndhope.org
Thank you
Organizer
Hannah Harvey
Organizer