Equipment for Lucy Bear
Donation protected
In June 2017 our beautiful daughter Lucy was born, our gorgeous little girl who's brightened our world but also turned it upside down in a dramatic fashion. Unfortunately Lucy was born having seizures and during the first few days of her life we were given the devastating news that she was unlikely to survive infancy and if she does will be left severely disabled.
Words cannot express how we felt.
After a rollercoaster few months Lucy was eventually diagnosed with a rare neurological condition called KCNQ2 epileptic encephalopathy which affects the way the potassium channel regulates brain activity. Today she is more stable than she was and is a little fighter but as predicted is severely disabled. She is on numerous medications to control her seizures but does still continue to have them daily. On a good day she has 2-3 and on a bad day she can have anywhere up to 25-30.  As part of her condition, and largely due to the seizures and medication, Lucy has severe developmental delay, impaired vision and difficulty feeding.
She is currently 18 months and is much stronger than first predicted and is a little bit more stable with her brain activity but she has very little head control, cannot sit up or support her trunk, and struggles with the use of her arms and legs. She completely relies on us to move her, feed her and support her. As Lucy is getting bigger (and heavier!) we need to buy bits of equipment (such as an adjustable height bath, postural seating, monitors etc) and will also have to make substantial adaptations to our house to accommodate Lucy's equipment and wheelchairs.
We don't usually like asking for help but we would be so incredibly grateful for any contributions to help with the costs of her equipment and home adaptations. Thank you so much for taking the time to read her story. We are in the process of organising a charity gig for Lucy in Lancaster in spring next year and would love you all to join us there. We'll update you with the details soon. Love Anna, James, Oliver and Lucy x
Words cannot express how we felt.
After a rollercoaster few months Lucy was eventually diagnosed with a rare neurological condition called KCNQ2 epileptic encephalopathy which affects the way the potassium channel regulates brain activity. Today she is more stable than she was and is a little fighter but as predicted is severely disabled. She is on numerous medications to control her seizures but does still continue to have them daily. On a good day she has 2-3 and on a bad day she can have anywhere up to 25-30.  As part of her condition, and largely due to the seizures and medication, Lucy has severe developmental delay, impaired vision and difficulty feeding.
She is currently 18 months and is much stronger than first predicted and is a little bit more stable with her brain activity but she has very little head control, cannot sit up or support her trunk, and struggles with the use of her arms and legs. She completely relies on us to move her, feed her and support her. As Lucy is getting bigger (and heavier!) we need to buy bits of equipment (such as an adjustable height bath, postural seating, monitors etc) and will also have to make substantial adaptations to our house to accommodate Lucy's equipment and wheelchairs.
We don't usually like asking for help but we would be so incredibly grateful for any contributions to help with the costs of her equipment and home adaptations. Thank you so much for taking the time to read her story. We are in the process of organising a charity gig for Lucy in Lancaster in spring next year and would love you all to join us there. We'll update you with the details soon. Love Anna, James, Oliver and Lucy x
Organizer
Anna Geary
Organizer