Ella and Kylies Rainbow Dreams Fund
Donation protected
Ella and Kylie's rainbow dreams fund has been setup to improve the lives of two fantastic and very brave, disabled little girls, both with different needs.
Both children have life limiting illnesses and have physical and intellectual impairment.
Ella Barbra-Ann Bewshear, our beautiful, amazing granddaughter was born on the 24/07/2012 and was diagnosed with a syndrome called Mosaic Patau Syndrome (mosaic Trisomy 13).
Mosaic Patau Syndrome is a chromosomal abnormality which half the cells contain extra genetic material from chromosome 13. Patau syndrome is associated with severe intellectual disability and physical abnormalities in many parts of the body.
More about Trisomy 13 here
The brain is often the most severely affected. Most children with trisomy 13 also have some kind of heart defect. It’s not unusual for these children to be born blind, deaf, and with no sense of smell. Children with trisomy 13 may also have abnormalities in the shape of their lips, eyes, ears, fingers, toes, and bones.
Ella has had many physiotherapy sessions to help with her posture and walking and also movement in her arms. She also has a hole in the heart and has regular checkups with her doctor. Her speech is not as developed as it should be for her age, making communication difficult; which makes her frustrated. She requires around-the-clock care and constant supervision.
We hope to raise funds to send Ella and her mummy on a respite break to disneyland Paris, where Ella can be stimulated and have some lovely memories for them both to treasure.
The second cause is for a sensory playroom for Kylie.
Kylie Grant, a fantastic, loving little girl was born on 20/03/2010. Sadly she was born with a very rare genetic disorder called Mowat Wilson syndrome.
'Mowat-Wilson syndrome is a genetic condition that affects many parts of the body. Major signs of this disorder frequently include distinctive facial features, intellectual disability, delayed development, an intestinal disorder called Hirschsprung disease, and other birth defects.'
More about Mowat-Wilson Syndrome here
Kylie will need 24 hour care for the rest of her life, She cannot walk, talk or feed herself.
Kylie also suffers from brain fits, which makes sleeping difficult and can only be kept under control using daily medication such as Melatonin and Levetiracetam Milphram.
Kylie has however responded brilliantly to sensory stimulation, especially from toys and objects that flash and make noise, and loves to watch colourful childrens TV programs.
We are hoping therefore to provide a SENSORY PLAYROOM for Kylie, in order to try and improve her quality of life and help her to relax at night.
Donations can be made here but also through our various fundraising activities too. We are having a Charity entertainment night on 27th May 2017, at the Pelaw Social CLub (Heworth House, Gateshead NE10 0XQ – 0191-469-242). There will be drag acts, cabaret acts, singers, a band and a disco. We will also have a tombola, teddy stall and a buffet. All funds raised externally, will also be added to this site and equally distributed between both causes.
Both children have life limiting illnesses and have physical and intellectual impairment.
Ella Barbra-Ann Bewshear, our beautiful, amazing granddaughter was born on the 24/07/2012 and was diagnosed with a syndrome called Mosaic Patau Syndrome (mosaic Trisomy 13).
Mosaic Patau Syndrome is a chromosomal abnormality which half the cells contain extra genetic material from chromosome 13. Patau syndrome is associated with severe intellectual disability and physical abnormalities in many parts of the body.
More about Trisomy 13 here
The brain is often the most severely affected. Most children with trisomy 13 also have some kind of heart defect. It’s not unusual for these children to be born blind, deaf, and with no sense of smell. Children with trisomy 13 may also have abnormalities in the shape of their lips, eyes, ears, fingers, toes, and bones.
Ella has had many physiotherapy sessions to help with her posture and walking and also movement in her arms. She also has a hole in the heart and has regular checkups with her doctor. Her speech is not as developed as it should be for her age, making communication difficult; which makes her frustrated. She requires around-the-clock care and constant supervision.
We hope to raise funds to send Ella and her mummy on a respite break to disneyland Paris, where Ella can be stimulated and have some lovely memories for them both to treasure.
The second cause is for a sensory playroom for Kylie.
Kylie Grant, a fantastic, loving little girl was born on 20/03/2010. Sadly she was born with a very rare genetic disorder called Mowat Wilson syndrome.
'Mowat-Wilson syndrome is a genetic condition that affects many parts of the body. Major signs of this disorder frequently include distinctive facial features, intellectual disability, delayed development, an intestinal disorder called Hirschsprung disease, and other birth defects.'
More about Mowat-Wilson Syndrome here
Kylie will need 24 hour care for the rest of her life, She cannot walk, talk or feed herself.
Kylie also suffers from brain fits, which makes sleeping difficult and can only be kept under control using daily medication such as Melatonin and Levetiracetam Milphram.
Kylie has however responded brilliantly to sensory stimulation, especially from toys and objects that flash and make noise, and loves to watch colourful childrens TV programs.
We are hoping therefore to provide a SENSORY PLAYROOM for Kylie, in order to try and improve her quality of life and help her to relax at night.
Donations can be made here but also through our various fundraising activities too. We are having a Charity entertainment night on 27th May 2017, at the Pelaw Social CLub (Heworth House, Gateshead NE10 0XQ – 0191-469-242). There will be drag acts, cabaret acts, singers, a band and a disco. We will also have a tombola, teddy stall and a buffet. All funds raised externally, will also be added to this site and equally distributed between both causes.
Organizer
Gary Edward Dunsford
Organizer