This page has been setup to help Sophia, (my daughter), in her fight against the incredibly cruel, progressive and incurable condition of Sanfilippo Syndrome, which is a form of Childhood Dementia.
Following the recent press surrounding our beautiful daughter's brave battle against this awful condition, which is stealing a little more of her everyday. We have been inundated with messages of love and support along with requests regarding donations, therefore we have established this page in response.
Funds raised will be used to provide Sophia with the best life possible while we can and to help us fight against this extremely rare, genetic, metabolic condition which has stolen so much from Sophia and continues to do so.
As the condition has taken a grip, we have had to helplessly watch Sophia's abilities like walking, talking, and eating all slowly fade away from our once bubbly bundle of joy. The twinkle in her eye is still there, as is the cheeky grin, but so much has been heartbreakingly stolen from her and in turn us.
Sophia has had to endue over 30 different symptoms and counting ranging from sleep apnea and seizures to double scoliosis and bowel issues. Yet we live the fullest life possible, smile, laugh and live for the day whilst holding onto hope for a future.
All of this has taken place whilst there is little recognition and even less support for Sophia, and children like her suffering from these Childhood Dementia conditions.
Therefore we fight for our daughter and others like her to be recognized, supported and cared for in the same way dementia is in adults or other terrible childhood conditions like cancer.
We cherish every moment we have, refuse to give up and are grateful for all of the love and support that we have received in the ten years since her diagnosis, (at the age of four). Your support, creates awareness which in turn creates hope for us!
Research, trials and breakthroughs are on the horizon yet we are losing the battles against time and appreciate all you can do to help raise awareness.
Lots of love,
Team Sophia
xxx
#curesanfilippo #childhooddementia #teamsophia #livefortoday
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You can find a link to the first report on Childhood Dementia in Scotland by copy and pasting the link below:
