Emery's Neu Moves
Donation protected
On April 2, 2018, Emery Kate D’Angelo was born, to Katy and Joe’s greatest delight. At four months, her parents noticed that she continued to act more as a newborn would, being unable to hold her head up, making poor eye contact, being unable to grab toys or bring them to her mouth and in addition she felt stiff in her limbs and yet floppy, being unable to support her body.
Emery was sent for an emergency MRI to rule out a brain tumour, inflammation, and to detect any abnormalities. The MRI ruled out any cancer, and inflammation, but it showed that Emery’s cerebellum never fully developed. The cerebellum controls movement, coordination, stability balance, as well as having a role in language and emotion regulation.
The family has been meeting with a neurologist and a geneticist to work on a diagnosis, which will aid in a prognosis for Emery, and what the future may look like based on how other people have faired with the same condition. They also rule out some progressive conditions, which have a poor prognosis. There is a long wait to get a diagnosis, as they have to scan Emery’s entire genome (all 25 000 chapters) and this requires the Minister of Health’s approval, as it is done out of country, in Maryland, US. There is a two month wait for approval, and then once approved, there is potentially another four months until they have results. There is a 20-40% chance that they will find a genetic cause and be able to give the family a prognosis.
Katy has unexpectedly extended her maternity leave, to be able to care for Emery, given how delayed she is in her development. Emery is now 9 months old, but she has not gained head control fully, and cannot roll over, or bring toys to her mouth yet although she is making small incremental gains. The Neurologist felt that Emery would progress, albeit slowly and would learn to compensate for what her brain lacks in her cerebellum, through Neurplasticity, and suggested trying to challenge her as much as possible, while she is young and her brain is still developing.
Emery has received some supports through CPRI and Vision Loss Ontario, but she is still waiting to see physiotherapy.
In the meantime, through much research, and reading on neuroplasticity, the family has found an alternative therapy called the Anat Baniel Method, which provides neuromovement lessons, to assist children with special needs, and has promising results. They were lucky to find a practitioner in Kitchener, as there are only a handful in Canada.
Emery has started her neuromovement lessons, and her family has seen her move in ways they never thought possible. She has been turning her head with more ease, tracking better with her eyes, opening her hands more, and starting to arch and reach (a precursor to rolling). The best is how happy she is and clearly engaged and learning! Unfortunately, while the research is starting to support this method, Neuroplasticity is still rather in its infancy, only being officially accepted as a concept in 2000. As such, it is not recognized or covered by insurance.
Katy and Joe are hoping to take Emery down to California, to the treatment facility in San Rafael, to consult with Anat Baniel herself, and receive treatment. This is where you come in. The treatment and travel costs are approximately $10 000, which on one income is unattainable. Your financial contributions would assist this family in providing this sweet baby’s treatment, and help her continue her treatments here in Ontario. Hopefully with your help we can help Emery learn to move and assist in easing the worries and financial burden for this family.
https://www.facebook.com/Emerys-Neu-Moves-400806047330086/
Emery was sent for an emergency MRI to rule out a brain tumour, inflammation, and to detect any abnormalities. The MRI ruled out any cancer, and inflammation, but it showed that Emery’s cerebellum never fully developed. The cerebellum controls movement, coordination, stability balance, as well as having a role in language and emotion regulation.
The family has been meeting with a neurologist and a geneticist to work on a diagnosis, which will aid in a prognosis for Emery, and what the future may look like based on how other people have faired with the same condition. They also rule out some progressive conditions, which have a poor prognosis. There is a long wait to get a diagnosis, as they have to scan Emery’s entire genome (all 25 000 chapters) and this requires the Minister of Health’s approval, as it is done out of country, in Maryland, US. There is a two month wait for approval, and then once approved, there is potentially another four months until they have results. There is a 20-40% chance that they will find a genetic cause and be able to give the family a prognosis.
Katy has unexpectedly extended her maternity leave, to be able to care for Emery, given how delayed she is in her development. Emery is now 9 months old, but she has not gained head control fully, and cannot roll over, or bring toys to her mouth yet although she is making small incremental gains. The Neurologist felt that Emery would progress, albeit slowly and would learn to compensate for what her brain lacks in her cerebellum, through Neurplasticity, and suggested trying to challenge her as much as possible, while she is young and her brain is still developing.
Emery has received some supports through CPRI and Vision Loss Ontario, but she is still waiting to see physiotherapy.
In the meantime, through much research, and reading on neuroplasticity, the family has found an alternative therapy called the Anat Baniel Method, which provides neuromovement lessons, to assist children with special needs, and has promising results. They were lucky to find a practitioner in Kitchener, as there are only a handful in Canada.
Emery has started her neuromovement lessons, and her family has seen her move in ways they never thought possible. She has been turning her head with more ease, tracking better with her eyes, opening her hands more, and starting to arch and reach (a precursor to rolling). The best is how happy she is and clearly engaged and learning! Unfortunately, while the research is starting to support this method, Neuroplasticity is still rather in its infancy, only being officially accepted as a concept in 2000. As such, it is not recognized or covered by insurance.
Katy and Joe are hoping to take Emery down to California, to the treatment facility in San Rafael, to consult with Anat Baniel herself, and receive treatment. This is where you come in. The treatment and travel costs are approximately $10 000, which on one income is unattainable. Your financial contributions would assist this family in providing this sweet baby’s treatment, and help her continue her treatments here in Ontario. Hopefully with your help we can help Emery learn to move and assist in easing the worries and financial burden for this family.
https://www.facebook.com/Emerys-Neu-Moves-400806047330086/
Co-organizers (7)
Sam Sutherland
Organizer
Springfield, ON
Katy DAngelo
Beneficiary
Anita Lankhuijzen
Co-organizer
Sabrina Vallance
Co-organizer
Allyson D'Angelo
Co-organizer
Emily McDonald
Co-organizer