Friends of Flossy
Donation protected
We are raising money so that Florence "Flossy" Kingsley can trial a particular expensive medication for one year. The aim is to alleviate the symptoms of her serious dystonic episodes, which present as similar to "fitting".
At four years old, Flossy is a bright, bubbly, inquisitive girl with a sharp sense of humour. She loves drawing, playing with her tiny dolls, and going to ballet classes. She loves making up jokes with Dad, laughing with her big brother, and having Mum do her hair in new styles.
However, Floss can't participate in any of these things when her body is having a dystonic episode. She can't comfortably sit up to eat, she can’t sit in the car booster seat, she becomes very distressed and she is unable to control her body. Flossy can’t do anything fun and enjoyable until the "fitting" passes. She also can’t communicate until the "fitting" passes.
Flossy was born with an undiagnosed syndrome, which still hasn't been identified despite the highest level genetic testing available. She has dystonia, cerebral palsy, deafness, scoliosis and her eyesight has deteriorated. Flossy needs a wheelchair for mobility, a PEG tube to be fed most of the time, and is fully reliant on others to help toilet. Her parents take her to attend numerous therapy and medical specialist appointments every week at the Royal Children's Hospital, and she has frequent admissions to the Royal Children's Hospital when her various symptoms become severe.
The "fitting" is not epilepsy. It is "frequent and intense episodes of severe generalised dystonia".
The "fitting" wakes Flossy multiple times every single night so that she sits up with her arms and hands contorted with spasticity, and it also interrupts her activities during the day. It affects Flossy's whole body, causing her torso to stiffen with her arms and hands contorted with the spasticity, her legs are stiff with toes pointed out, and her neck pulls her head back and to the side. Flossy doesn't realise that she lets out a really loud and repetitive moaning noise, hitting 100dB, which is disturbing for the whole family. As a result of these dystonic episodes Flossy has chipped her teeth, and she has bitten her thumb so badly that she has bitten into the flesh of her thumb. She scratches her face, her ears, and even around the peg tube entry until everything bleeds. Often she wakes in the night with blood everywhere, all over the sheets.
This "fitting" can go on for hours and hours, up to 6 hours at a time.
During the night, Flossy can’t return to sleep unless one of her parents picks her up and comforts her until the "fitting" subsides.
Mum and Dad are absolutely, totally exhausted and the situation is stressful for them and for Flossy’s big brother.
But why does Flossy need to trial this particular expensive medication? Excellent question!
Flossy was prescribed one of the strongest benzodiazepine medications last year, which is not usually prescribed for children. She has been on the highest dose possible for her tiny body. This was the only medication that had some limited success in dampening her symptoms. None of the other usual medications had worked!
Unfortunately, Flossy was not able to take this long-term due to the health risks it posed, plus the benzodiazepine was becoming less and less effective.
Flossy must trial this particular expensive medication as there is no other medication that her specialists can prescribe.
The medication costs $375 for a 25 mls bottle. Flossy is prescribed a maximum daily dose of 3mls. So a 25 mls bottle will only last eight days!!
That's an annual cost of $17,110.
This particular medication still receives some controversial exposure in the press, and it is not on the PBS (Pharmaceutical Benefits Scheme). This means Flossy's parents are faced with this huge expense, yet another significant stress on this family’s situation. If the expensive medication proves successful, then this will be an ongoing financial stress for the family on top of all of the usual expenses of family life.
On a broader note, if this particular medication proves successful for Flossy, it will not have the harmful side-effects. And every successful outcome for children like Flossy adds weight to the need for it to be listed on the PBS so it would be more affordable, making it accessible for people in need like Flossy and her family.
If there are extra funds donated, these will be redirected to Syndromes Without A Name (SWAN) - Australia, who are a fantastic support for families caring for a child with an undiagnosed or rare genetic condition. See their website at swanaus.org.au.
Thankyou for helping Flossy and her family.
Thankyou from us,
Sue Benn and Christina Wyatt
At four years old, Flossy is a bright, bubbly, inquisitive girl with a sharp sense of humour. She loves drawing, playing with her tiny dolls, and going to ballet classes. She loves making up jokes with Dad, laughing with her big brother, and having Mum do her hair in new styles.
However, Floss can't participate in any of these things when her body is having a dystonic episode. She can't comfortably sit up to eat, she can’t sit in the car booster seat, she becomes very distressed and she is unable to control her body. Flossy can’t do anything fun and enjoyable until the "fitting" passes. She also can’t communicate until the "fitting" passes.
Flossy was born with an undiagnosed syndrome, which still hasn't been identified despite the highest level genetic testing available. She has dystonia, cerebral palsy, deafness, scoliosis and her eyesight has deteriorated. Flossy needs a wheelchair for mobility, a PEG tube to be fed most of the time, and is fully reliant on others to help toilet. Her parents take her to attend numerous therapy and medical specialist appointments every week at the Royal Children's Hospital, and she has frequent admissions to the Royal Children's Hospital when her various symptoms become severe.
The "fitting" is not epilepsy. It is "frequent and intense episodes of severe generalised dystonia".
The "fitting" wakes Flossy multiple times every single night so that she sits up with her arms and hands contorted with spasticity, and it also interrupts her activities during the day. It affects Flossy's whole body, causing her torso to stiffen with her arms and hands contorted with the spasticity, her legs are stiff with toes pointed out, and her neck pulls her head back and to the side. Flossy doesn't realise that she lets out a really loud and repetitive moaning noise, hitting 100dB, which is disturbing for the whole family. As a result of these dystonic episodes Flossy has chipped her teeth, and she has bitten her thumb so badly that she has bitten into the flesh of her thumb. She scratches her face, her ears, and even around the peg tube entry until everything bleeds. Often she wakes in the night with blood everywhere, all over the sheets.
This "fitting" can go on for hours and hours, up to 6 hours at a time.
During the night, Flossy can’t return to sleep unless one of her parents picks her up and comforts her until the "fitting" subsides.
Mum and Dad are absolutely, totally exhausted and the situation is stressful for them and for Flossy’s big brother.
But why does Flossy need to trial this particular expensive medication? Excellent question!
Flossy was prescribed one of the strongest benzodiazepine medications last year, which is not usually prescribed for children. She has been on the highest dose possible for her tiny body. This was the only medication that had some limited success in dampening her symptoms. None of the other usual medications had worked!
Unfortunately, Flossy was not able to take this long-term due to the health risks it posed, plus the benzodiazepine was becoming less and less effective.
Flossy must trial this particular expensive medication as there is no other medication that her specialists can prescribe.
The medication costs $375 for a 25 mls bottle. Flossy is prescribed a maximum daily dose of 3mls. So a 25 mls bottle will only last eight days!!
That's an annual cost of $17,110.
This particular medication still receives some controversial exposure in the press, and it is not on the PBS (Pharmaceutical Benefits Scheme). This means Flossy's parents are faced with this huge expense, yet another significant stress on this family’s situation. If the expensive medication proves successful, then this will be an ongoing financial stress for the family on top of all of the usual expenses of family life.
On a broader note, if this particular medication proves successful for Flossy, it will not have the harmful side-effects. And every successful outcome for children like Flossy adds weight to the need for it to be listed on the PBS so it would be more affordable, making it accessible for people in need like Flossy and her family.
If there are extra funds donated, these will be redirected to Syndromes Without A Name (SWAN) - Australia, who are a fantastic support for families caring for a child with an undiagnosed or rare genetic condition. See their website at swanaus.org.au.
Thankyou for helping Flossy and her family.
Thankyou from us,
Sue Benn and Christina Wyatt
Co-organizers (2)
Sue Benn
Organizer
Preston, VIC
Jesse Kingsley
Beneficiary
Christina Wyatt
Co-organizer