Welcome
Click Here to Read About My August 25th Swim Up the Hudson River!
and Click Here for Pictures!
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~ About Spinal Muscular Atrophy (SMA) ~
Spinal Muscular Atrophy, the number one genetic killer of children under the age of two, is a group of inherited and often fatal diseases that destroys the nerves controlling voluntary muscle movement involved with crawling, walking, head and neck movements, swallowing, and breathing. SMA does not impair intelligence or personality development.
When the struggle to keep a child alive and comfortable is lessened, parents may devote more time and attention to their child’s intellectual development and emotional health. Importantly, more time is available for family and personal needs. Although life will be short, the illness places no limits on a child’s ability to feel happy and loved.
*CLICK HERE TO LEARN MORE ABOUT SMA*
~ About Isabella ~
i met joanna kurek about 4 years ago when I started a new job in norwalk, ct. she was pregnant with her second child, and was trying to train me before taking her maternity leave. we had many things in common: we were both in our 20s, worked with & loved animals, were both polish :), and loved to sneak food breaks during work!
after joanna gave birth to her beautiful baby girl, Isabella (who was later diagnosed with SMA) i came to see what a strong, loving, amazing woman she really is. i've watched her take on the challange of being a working single mother to a chronically ill child: perserving through the tough times and celebrating the joys.
i've also seen joanna struggle with isabella's enormous medical bills. it's been a dream for the past 3 years to be able to help in some small way. so i set a personal goal to take on some of the tri-state area's open water swimming challenges, and hope to also use these events to raise funds for isabella's family and other children with SMA, as well as awareness about the daily struggles these families face. these are the bravest children i've met, and it is my intention that this fundraising will allievate some of their families' burden.
100% of all fundraising efforts will go to support children and families affected by SMA, going directly to help offset the costs of medications, hospital visits, medical equipment, wheelchairs, and house/car modifications.