Help Send Princesses to Disneyland
Donation protected
I’d like to introduce you to one of my closest friends, and the most amazing woman I know - Lynne. Lynne has two beautiful daughters - Katherine, 17 and Victoria, 11. Both suffer with the rare and cruel condition, Severe Myoclonic Epilepsy of Infancy, or Dravet Syndrome.
Dravet is a severe and catastrophic form of life-limiting epilepsy, for which there is no cure. These girls fit aggressively at least three times a week, and have multiple ‘absences’ of consciousness too. Lynne and I have been close friends for almost 18 years, and I have watched over the years as she raises Katherine and Victoria alone, sacrificing herself for the health and happiness of her daughters. Being born with Dravet means that Katherine and Victoria also suffer with severe learning difficulties, with mental ages of 6-4 year olds, as well as being on the Autism spectrum.
They can never be left alone, day or night, and are robbed of the freedom that other young girls enjoy. Labels and pictures around the house guide the girls through daily life – from sign-posting their bedrooms to warning about the stove. Explaining to her daughters why they can never go out alone to the shops with their friends or learn to drive, and comforting their disappointment, is very difficult for Lynne. For Katherine in particular, the experience of going to a party with her friends, only to fit and wake up at home with no memory of the afternoon she’d so been looking forward to, is a pain that can be overwhelming. The injustice of her and her sister’s condition is not unnoticed by Katherine, who sometimes feels life and the world is passing her by.
Life has been and continues to be tough. A fit can be brought on by anything from a change of temperature, running or jumping, to even feeling excited when visiting Santa and his sleigh. These fits are dangerous and frightening. It has been a long journey for Lynne to give her daughters the courage to overcome the fear of fitting, but they now live lives with meaning and enjoy the things that other children can. Both of these beautiful children enjoy music, films, arts and crafts. Victoria in particular loves a good puzzle! Despite their daily challenges, they are bubbly, chatty and full of love. Thanks to Lynne’s dedication to her daughters, the girls have even found the courage to try swimming, though fits in the pool remain a scary reality. Horse-riding is also a favourite hobby – but every time they fit, they get back up and try again.
Lynne’s unwavering strength is an inspiration to me every day. I watch as she overcomes the adversity, sadness and horror of Dravet, to bring laughter, joy and hope into her daughters’ lives. But I would like to do something more for her - and I need your help to achieve it.
I would like to give them the break they so deserve by making their wish come true – a trip to Disneyland Paris.
We aim to raise £5,000 to give these sisters and their Mum this holiday of a lifetime in May of 2016. Because of their condition, it is too dangerous for the girls to fly and they would need to travel by Eurostar, as well as with accompanying carers. This trip is something way beyond the means of Lynne, who is unable to work as she cares for daughters full time, but it is no less than her and her children deserve.
In many ways, these girls are living in a constant fairy-tale; but it is a cruel and dark one at times. They would be in complete awe of the beauty and magic of Disneyland - Disney characters never go out of fashion for them, and are a source of fun and happiness. Yes, they may fit and they will need constant care – but it is the ethos of this family that these girls could be locked in a padded room all day and night shielded from the world, yet they could still fit and hurt themselves. Surely it is better to embrace life and experience all it has to offer?
The money raised will pay for Katherine and Victoria, their Mum Lynne and two specialist carers to enjoy this once-in-a-lifetime experience that they can treasure forever.
We’d like to take this opportunity to say a very big thank you to the amazing care and support that they have received over the years.
And, a huge thank you to you - for taking the time to read and share our page. We hope you will find it in your heart to contribute to this fantastic life experience for Lynne, Katherine and Victoria. Please - let’s make the Disney dream come true for these amazing Princesses.
Dravet is a severe and catastrophic form of life-limiting epilepsy, for which there is no cure. These girls fit aggressively at least three times a week, and have multiple ‘absences’ of consciousness too. Lynne and I have been close friends for almost 18 years, and I have watched over the years as she raises Katherine and Victoria alone, sacrificing herself for the health and happiness of her daughters. Being born with Dravet means that Katherine and Victoria also suffer with severe learning difficulties, with mental ages of 6-4 year olds, as well as being on the Autism spectrum.
They can never be left alone, day or night, and are robbed of the freedom that other young girls enjoy. Labels and pictures around the house guide the girls through daily life – from sign-posting their bedrooms to warning about the stove. Explaining to her daughters why they can never go out alone to the shops with their friends or learn to drive, and comforting their disappointment, is very difficult for Lynne. For Katherine in particular, the experience of going to a party with her friends, only to fit and wake up at home with no memory of the afternoon she’d so been looking forward to, is a pain that can be overwhelming. The injustice of her and her sister’s condition is not unnoticed by Katherine, who sometimes feels life and the world is passing her by.
Life has been and continues to be tough. A fit can be brought on by anything from a change of temperature, running or jumping, to even feeling excited when visiting Santa and his sleigh. These fits are dangerous and frightening. It has been a long journey for Lynne to give her daughters the courage to overcome the fear of fitting, but they now live lives with meaning and enjoy the things that other children can. Both of these beautiful children enjoy music, films, arts and crafts. Victoria in particular loves a good puzzle! Despite their daily challenges, they are bubbly, chatty and full of love. Thanks to Lynne’s dedication to her daughters, the girls have even found the courage to try swimming, though fits in the pool remain a scary reality. Horse-riding is also a favourite hobby – but every time they fit, they get back up and try again.
Lynne’s unwavering strength is an inspiration to me every day. I watch as she overcomes the adversity, sadness and horror of Dravet, to bring laughter, joy and hope into her daughters’ lives. But I would like to do something more for her - and I need your help to achieve it.
I would like to give them the break they so deserve by making their wish come true – a trip to Disneyland Paris.
We aim to raise £5,000 to give these sisters and their Mum this holiday of a lifetime in May of 2016. Because of their condition, it is too dangerous for the girls to fly and they would need to travel by Eurostar, as well as with accompanying carers. This trip is something way beyond the means of Lynne, who is unable to work as she cares for daughters full time, but it is no less than her and her children deserve.
In many ways, these girls are living in a constant fairy-tale; but it is a cruel and dark one at times. They would be in complete awe of the beauty and magic of Disneyland - Disney characters never go out of fashion for them, and are a source of fun and happiness. Yes, they may fit and they will need constant care – but it is the ethos of this family that these girls could be locked in a padded room all day and night shielded from the world, yet they could still fit and hurt themselves. Surely it is better to embrace life and experience all it has to offer?
The money raised will pay for Katherine and Victoria, their Mum Lynne and two specialist carers to enjoy this once-in-a-lifetime experience that they can treasure forever.
We’d like to take this opportunity to say a very big thank you to the amazing care and support that they have received over the years.
And, a huge thank you to you - for taking the time to read and share our page. We hope you will find it in your heart to contribute to this fantastic life experience for Lynne, Katherine and Victoria. Please - let’s make the Disney dream come true for these amazing Princesses.
Organizer
Angela Mcnamara
Organizer