Chris Skrabski
Kitty's Cure
Fundraising for NesT
Story
Thanks for taking the time to visit my JustGiving page.
A couple of days before her 7th birthday Kitty was diagnosed with Nephrotic Syndrome, the cause of which is unknown.
In NS the immune system attacks the kidneys, Kitty’s has failed to respond to standard treatments, so we took her to Great Ormond Street, who performed a biopsy on her kidney which showed she has a rare aggressive form of NS, called focal segmental glomeruli sclerosis (FSGS).
FSGS is sometimes treatable, but not curable, it is a chronic disease and ultimately unless the right treatment can be found, it will lead to kidney failure. That may not be the end, because the underlying cause is unknown the FSGS can come back in the transplanted kidney sometimes within hours.
Kitty has had to take a range of really foul medicines and chemo for 8 months trying to put her in to remission, none of which have worked yet, and have left her with virtually no immune system. Chicken pox can land her in hospital for weeks, and worse, but we are hopeful that by funding research a cause and ultimately a cure can be found.
NeST is the Nephrotic Syndrome Trust, that funds research completed by Bristol University Hospital in to all forms of NS, they work closely with centres around the world and provide much needed support for the patients and families.
Because it is a rare disease, and ultimately not enough people die from NS for there to be much in the way of NHS funding or drug company research. Most of the treatments out there are happy accidents from drugs used to treat other auto immune diseases like arthritis.
Literally Kitty is one in a million.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
*********UPDATED 29/11/2015***********
This year has included some heart-breaking, breath-stopping moments! It's been a tough year with more to follow before Kitty finally goes to transplant.
We hope to continue to raise funds for NeST in 2016 as all funds raised goes to fund research with actual feet on the floor; testing. ...no administration, no CEO or member stakeholders.
2016 will hopefully succeed in the 24hr three peaks challenge in June and we plan to organise an event too.
A couple of days before her 7th birthday Kitty was diagnosed with Nephrotic Syndrome, the cause of which is unknown.
In NS the immune system attacks the kidneys, Kitty’s has failed to respond to standard treatments, so we took her to Great Ormond Street, who performed a biopsy on her kidney which showed she has a rare aggressive form of NS, called focal segmental glomeruli sclerosis (FSGS).
FSGS is sometimes treatable, but not curable, it is a chronic disease and ultimately unless the right treatment can be found, it will lead to kidney failure. That may not be the end, because the underlying cause is unknown the FSGS can come back in the transplanted kidney sometimes within hours.
Kitty has had to take a range of really foul medicines and chemo for 8 months trying to put her in to remission, none of which have worked yet, and have left her with virtually no immune system. Chicken pox can land her in hospital for weeks, and worse, but we are hopeful that by funding research a cause and ultimately a cure can be found.
NeST is the Nephrotic Syndrome Trust, that funds research completed by Bristol University Hospital in to all forms of NS, they work closely with centres around the world and provide much needed support for the patients and families.
Because it is a rare disease, and ultimately not enough people die from NS for there to be much in the way of NHS funding or drug company research. Most of the treatments out there are happy accidents from drugs used to treat other auto immune diseases like arthritis.
Literally Kitty is one in a million.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
*********UPDATED 29/11/2015***********
This year has included some heart-breaking, breath-stopping moments! It's been a tough year with more to follow before Kitty finally goes to transplant.
We hope to continue to raise funds for NeST in 2016 as all funds raised goes to fund research with actual feet on the floor; testing. ...no administration, no CEO or member stakeholders.
2016 will hopefully succeed in the 24hr three peaks challenge in June and we plan to organise an event too.