David's Pool League fundraising and donations for Dravet Syndrome UK page
David Sims is raising money for Dravet Syndrome UK
Story
Thanks for taking the time to visit my JustGiving page.
Thanks to Stonehaven and District Pool league. All the teams are selling scratch cards and donating money each week. I will keep an update via this page. this page can also be used for donations. my brother just donated his first new £5 to Dravet Syndrome UK so feel free to donate yours. Many thanks to everyone for fundraising for such an amazing charity.
Our son Logan was diagnosed with Dravet Syndrome at 9 months old. He has multiple types of seizures that last from a few seconds to the longest just over 2 hours. We have enough release slips from the hospital to wallpaper the house almost. When people ask me about Dravet Syndrome they more often than not have not heard of it so here's the brief.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy, with an estimated incidence rate of 1:16,000 to 1:21,000 [1]. It is a debilitating, life-long condition that can severely impede the quality of life of the patient. Patients experience frequent seizures, poor seizure control, and developmental delays. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated health issues, which also need to be properly treated and managed. These conditions include:
behavioral and developmental delays
movement and balance issues
orthopedic conditions
delayed language and speech issues
growth and nutrition issues
sleeping difficulties
chronic infections
sensory integration disorders
disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.
Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders may face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children can be poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.
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.
Thanks to Stonehaven and District Pool league. All the teams are selling scratch cards and donating money each week. I will keep an update via this page. this page can also be used for donations. my brother just donated his first new £5 to Dravet Syndrome UK so feel free to donate yours. Many thanks to everyone for fundraising for such an amazing charity.
Our son Logan was diagnosed with Dravet Syndrome at 9 months old. He has multiple types of seizures that last from a few seconds to the longest just over 2 hours. We have enough release slips from the hospital to wallpaper the house almost. When people ask me about Dravet Syndrome they more often than not have not heard of it so here's the brief.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy, with an estimated incidence rate of 1:16,000 to 1:21,000 [1]. It is a debilitating, life-long condition that can severely impede the quality of life of the patient. Patients experience frequent seizures, poor seizure control, and developmental delays. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated health issues, which also need to be properly treated and managed. These conditions include:
behavioral and developmental delays
movement and balance issues
orthopedic conditions
delayed language and speech issues
growth and nutrition issues
sleeping difficulties
chronic infections
sensory integration disorders
disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.
Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders may face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children can be poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.
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.