Alliza-Lily's Garden of Discovery
Donation protected
When Alliza-Lily was 6 days old, she turned blue and lifeless at home and was rushed to hospital. After a few days at our local hospital, she was transferred to Great Ormond Street Hospital (
http://www.gosh.nhs.uk/
) where she was diagnosed with Hyperinsulinism (overproduction of insulin causing hypoglycaemia).
www.hi-fund.org
. Without the quick intervention from paramedics and the wonderful team at our local hospital, Alliza-Lily would not be here today.
As time has gone on, Alliza-Lily has not met development milestones such as walking/talking etc. With the wonderful care and attention from the Hyperinsulinism Team at Great Ormond Street, who listened to our concerns, requested test after test, and work closely with our local Paediatric Consultant, Alliza-Lily has now also been diagnosed with a rare genetic condition called Coffin-Siris Syndrome. CSS affects various body systems such as lax joints, low muscle tone, feeding difficulties, mental and physical development delays, respiratory infections etc, all of which effect Alliza-Lily.
Her daily life consists of a strict feeding regime to help control blood sugars along with medication, physiotherapy for gross and fine motor skills, and assistance for communiation/eating/playing/getting around etc.
Alliza-Lily is a happy little girl, with great determination and loves to explore the environment around her. She gets around in the house either by crawling or using her walking frame. Exploring outdoors is more difficult as the garden at home is not safe for her to move about freely. The ground is very uneven and where the path meets the grass, there are drops in various sizes of up to 6 inches. With Alliza-Lily, she has no spatial awareness and no sense of danger. She sees where she wants to go and just goes without assessing the area around her. There have been a few incidents where she has nearly toppled over in her walking frame because of the garden being uneven and so has spent very little time outdoors playing this year, something I feel she needs and is essential for her development.
I'm currently awaiting a visit from my landlord and Community Occupational Therapist to see if we can all work together to rectify the garden and make it a safe enviroment in which Alliza-Lily can have freedom to explore in, play, and learn more about her environment and the world around her.
This page has been set up to fundraise to help get the ground level and artificial grass installed so that Alliza-Lily can get out in the garden all year round. I have already installed new fencing as a start but there is so much more to do.
If you would like to make a donation, no matter how small, please know that it is very much appreciated and goes towards helping a little girls need for exploration, learning and developing.
Thank you so much :-) xxx
http://www.gosh.nhs.uk/
) where she was diagnosed with Hyperinsulinism (overproduction of insulin causing hypoglycaemia).
www.hi-fund.org
. Without the quick intervention from paramedics and the wonderful team at our local hospital, Alliza-Lily would not be here today.
As time has gone on, Alliza-Lily has not met development milestones such as walking/talking etc. With the wonderful care and attention from the Hyperinsulinism Team at Great Ormond Street, who listened to our concerns, requested test after test, and work closely with our local Paediatric Consultant, Alliza-Lily has now also been diagnosed with a rare genetic condition called Coffin-Siris Syndrome. CSS affects various body systems such as lax joints, low muscle tone, feeding difficulties, mental and physical development delays, respiratory infections etc, all of which effect Alliza-Lily.
Her daily life consists of a strict feeding regime to help control blood sugars along with medication, physiotherapy for gross and fine motor skills, and assistance for communiation/eating/playing/getting around etc.
Alliza-Lily is a happy little girl, with great determination and loves to explore the environment around her. She gets around in the house either by crawling or using her walking frame. Exploring outdoors is more difficult as the garden at home is not safe for her to move about freely. The ground is very uneven and where the path meets the grass, there are drops in various sizes of up to 6 inches. With Alliza-Lily, she has no spatial awareness and no sense of danger. She sees where she wants to go and just goes without assessing the area around her. There have been a few incidents where she has nearly toppled over in her walking frame because of the garden being uneven and so has spent very little time outdoors playing this year, something I feel she needs and is essential for her development.
I'm currently awaiting a visit from my landlord and Community Occupational Therapist to see if we can all work together to rectify the garden and make it a safe enviroment in which Alliza-Lily can have freedom to explore in, play, and learn more about her environment and the world around her.
This page has been set up to fundraise to help get the ground level and artificial grass installed so that Alliza-Lily can get out in the garden all year round. I have already installed new fencing as a start but there is so much more to do.
If you would like to make a donation, no matter how small, please know that it is very much appreciated and goes towards helping a little girls need for exploration, learning and developing.
Thank you so much :-) xxx
Organizer
Michelle Walkley
Organizer
