Help Fund Lyra's Wheelchair
Donation protected
I first met Lyra in New York about 2 years ago; she stole everyone’s heart as her sister Ava pushed her in her wheelchair down the runway of a New York Fashion Week event. Her mom, my best friend Heather, was there standing behind me in the photographers pit sobbing at the beautiful moment we were all witnessing. And that’s just what Lyra does, she breaths life into the rooms she enters – she has this infectious smile, she loves when people sing to her, and she loves to make new friends! She’s just like every other 7 year old, except she has a rare disease that only 7 other people in the world have been linked to. Her condition is so rare that it doesn’t even have a name yet.
Her disease is caused by an unknown gene linked to only 7 other cases worldwide. It causes her to have global atrophy of the brain, which indicates degeneration and low life expectancy. She can’t walk, talk, or eat solid food – Her eyes have multiple issues. Her head flops back easily so she cannot sit for long periods unassisted.
She cannot use her arms and hands purposefully to grab and hold objects, not even her own bottle. She shows her personality in funny ways when you get to know her, and she speaks through grunts and moans, and she communicates with her feet too!
If all of this wasn’t trying enough, Lyra’s wheelchair and other essential medical tools to make Lyra’s quality of life better have just been denied by insurance due to loopholes in their current providers plans. The current chair Lyra is using has reached and far surpassed it’s ability to support Lyra’s size and Heather has been adding makeshift pieces of foam to make it more comfortable for Lyra while she saves the money to pay out of pocket for this new wheelchair.
Heather and her husband would never ask for a hand out. Heather is one of the hardest working women I have ever met. She never asks for pity or charity. She herself has mounting medical issues and works on her feet sometimes in excess of 12+ hours a day. Her husband also works fulltime, and they support their oldest daughters dreams of being in actress, on top of all of Lyra’s medical bills.
This wheelchair would greatly improve Lyra’s quality of life, anything outside of their home is a not an option without her wheelchair. Walks in the sun down the block, attending a dinner out with family, school, doctors visits, essentially anything that requires her to leave her house.
We’re all always looking for one great way to help spread positivity in the world, this is it! This little girl will not have all of life’s opportunities, her parents truthfully don’t even know how long they have to cherish her on this earth – and everyday is a miracle. If we could all come together and help this family to pay for this essential tool to help make a little girls life happier, and a families life easier I think we should do it! If your unable to donate, just sharing Lyra’s story would help, maybe her story will touch someone on your social platform and they can help to make this dream a reality.
Thank you xx
Her disease is caused by an unknown gene linked to only 7 other cases worldwide. It causes her to have global atrophy of the brain, which indicates degeneration and low life expectancy. She can’t walk, talk, or eat solid food – Her eyes have multiple issues. Her head flops back easily so she cannot sit for long periods unassisted.
She cannot use her arms and hands purposefully to grab and hold objects, not even her own bottle. She shows her personality in funny ways when you get to know her, and she speaks through grunts and moans, and she communicates with her feet too!
If all of this wasn’t trying enough, Lyra’s wheelchair and other essential medical tools to make Lyra’s quality of life better have just been denied by insurance due to loopholes in their current providers plans. The current chair Lyra is using has reached and far surpassed it’s ability to support Lyra’s size and Heather has been adding makeshift pieces of foam to make it more comfortable for Lyra while she saves the money to pay out of pocket for this new wheelchair.
Heather and her husband would never ask for a hand out. Heather is one of the hardest working women I have ever met. She never asks for pity or charity. She herself has mounting medical issues and works on her feet sometimes in excess of 12+ hours a day. Her husband also works fulltime, and they support their oldest daughters dreams of being in actress, on top of all of Lyra’s medical bills.
This wheelchair would greatly improve Lyra’s quality of life, anything outside of their home is a not an option without her wheelchair. Walks in the sun down the block, attending a dinner out with family, school, doctors visits, essentially anything that requires her to leave her house.
We’re all always looking for one great way to help spread positivity in the world, this is it! This little girl will not have all of life’s opportunities, her parents truthfully don’t even know how long they have to cherish her on this earth – and everyday is a miracle. If we could all come together and help this family to pay for this essential tool to help make a little girls life happier, and a families life easier I think we should do it! If your unable to donate, just sharing Lyra’s story would help, maybe her story will touch someone on your social platform and they can help to make this dream a reality.
Thank you xx
Organizer and beneficiary
Gianna Nicole
Organizer
Scottsdale, AZ
Heather Polyi
Beneficiary
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