2019 Claire's Cup | Landon's Story

2019 Claire's Cup | Landon's Story

 

Claire's Cup is a charity event sponsored by St. Mary’s Soccer which raises funds for a St. Mary's County child facing a serious medical challengeClaire’s Cup began some years ago when one of St. Mary’s Soccer own - Claire Broadhead was undergoing treatment for Leukemia and the soccer community responded with great kindness and generosity to assist the family with the first Claire’s Cup. The proceeds from the adult division 4v4 tournament (minus expenses) are donated to the Claire’s Cup Honoree and their family. St. Mary’s Soccer has continued this event every year in support of St. Mary’s County families. 

 

This year’s Claire’s Cup honoree is Landon Finch.  Landon is a sweet, kind, 11-year-old boy who has battled Dravet Syndrome since infancy.  Dravet Syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.  Landon began having seizures at 4 months old and was diagnosed with Dravet Syndrome at the age of 6.  He requires constant care both at school and at home.  Since Landon was an infant, his family has had extensive time away from home for diagnosis and treatment.  

 

According to the Dravet Syndrome Foundation, Dravet Syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene. While seizures persist, other comorbidities such as developmental delay and abnormal EEGs are often not evident until the second or third year of life. Common issues associated with Dravet Syndrome include:

  • Prolonged seizures
  • Frequent seizures
  • 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
  • Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues

Current treatment options are limited, and the constant care required for someone suffering from Dravet Syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet Syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections. Research for a cure offers patients and families hope for a better quality of life for their loved ones.

Landon has been through extensive doctors and hospital systems to include Children’s Hospital and Georgetown.  There are very few neurologists who specialize pediatric complex epilepsy conditions.  Landon has not led a life without consistent seizures of many kinds.  Despite Landon’s condition he always remains positive and lets nothing hold him back.  He loves cooking, sports, board games and his favorite Netflix shows.  He truly is the definition of strength and kindness, and St. Mary’s Soccer is honored to share his story.

Come out to Claire's Cup and show your support to Landon and his family!  

 

CLICK HERE TO REGISTER

 

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