Lily Harriss Foundation for BPAN
Donation protected
https://app.frame.io/f/1fdc8c17-c8b9-4ca6-8665-aaf8ee4d2d1a
May I please introduce you to Lily Harriss, she has BPAN a sub type of NBIA and she is my beautiful niece.
What is BPAN? Beta-propeller protein-associated neurodegeneration (BPAN), a rare form of NBIA. What is NBIA - Neurodegeneration with brain iron accumulation (NBIA). What does this mean? Essentially it's a degenerative brain disorder. Often there is a loss of brain cells and tissue in the cerebral area of the brain, a condition called generalized cerebral atrophy. During adolescence or adulthood, affected individuals experience a relatively sudden onset of progressive dystonia-parkinsonism and cognitive decline.
BPAN is a terrible condition that is hyper rare. Infact probably only 40 children have been diagnosed with this condition worldwide. Being hyper rare it is barely recognised by charities. However, these children do need help. Lily has donated skin cells to be used in vital research for BPAN. Whilst the effects of her research contribution may not be seen in her lifetime, it will hopefully, go towards helping another child in future generations.
We'd like to raise funds for Lily, as in her lifetime, she needs costly specialist equipment. Whilst she is able to walk now, there perhaps will come a day when this is less likely. So, her mummy and daddy have been saving up to buy her a bespoke bicycle which would give Lily more freedom and also necessary assistance to improve vital motorskills.
We are raising this money to give her a better quality of life. We'd like to donate funding also to BPAN research. To fund holidays and trips for her and other special needs families. To create a platform whereby Lily is able to help other children with BPAN or a similar condition.
You'll not only make a difference to Lily, but to all of the BPAN family. We are a small minority group - but we're all parents, and the children within our community are beautiful, unconditional, innocent and desperately in need our help.
Please give generously and please feel free to contact us for any further information.
May I please introduce you to Lily Harriss, she has BPAN a sub type of NBIA and she is my beautiful niece.
What is BPAN? Beta-propeller protein-associated neurodegeneration (BPAN), a rare form of NBIA. What is NBIA - Neurodegeneration with brain iron accumulation (NBIA). What does this mean? Essentially it's a degenerative brain disorder. Often there is a loss of brain cells and tissue in the cerebral area of the brain, a condition called generalized cerebral atrophy. During adolescence or adulthood, affected individuals experience a relatively sudden onset of progressive dystonia-parkinsonism and cognitive decline.
BPAN is a terrible condition that is hyper rare. Infact probably only 40 children have been diagnosed with this condition worldwide. Being hyper rare it is barely recognised by charities. However, these children do need help. Lily has donated skin cells to be used in vital research for BPAN. Whilst the effects of her research contribution may not be seen in her lifetime, it will hopefully, go towards helping another child in future generations.
We'd like to raise funds for Lily, as in her lifetime, she needs costly specialist equipment. Whilst she is able to walk now, there perhaps will come a day when this is less likely. So, her mummy and daddy have been saving up to buy her a bespoke bicycle which would give Lily more freedom and also necessary assistance to improve vital motorskills.
We are raising this money to give her a better quality of life. We'd like to donate funding also to BPAN research. To fund holidays and trips for her and other special needs families. To create a platform whereby Lily is able to help other children with BPAN or a similar condition.
You'll not only make a difference to Lily, but to all of the BPAN family. We are a small minority group - but we're all parents, and the children within our community are beautiful, unconditional, innocent and desperately in need our help.
Please give generously and please feel free to contact us for any further information.
Organizer
Victoria Cazzoli
Organizer
