We are the proud parents of two children, Alex and Madelyn. Our son, Alex was born in January 2007 and we thought we had parenting down pretty well when our daughter Madelyn was born in April 2009. What we didn't know was that our life was about to change in a very unexpected way. About 4 hours after Madelyn was born she had her first seizure. She stopped breathing while we were holding her and was rushed to the NICU at St. Francis Eastside Hospital. The following morning, after 3 more seizure like episodes, she was transferred to the NICU at Greenville Memorial Hospital. We were able to take our baby home a week later with no answers as to why this happend. After 9 months of meeting with specialists, missed milestones, and several tests Madelyn was officially diagnosed with a rare chromosome abnormality, 2q23.1 Microdeletion Syndrome.
We have spent the last year and a half coming to terms with her diagnosis and what it means to our family. Alisa quit her full time job in June 2010 to stay home and care for Madelyn and spend more time with Alex. It was the best decision for our family, but one that we did not plan for. Our biggest challenge since Madelyn's diagnosis is finding enough money to stay afloat. We exhausted searching for assistance and found many great programs to help pay for doctors visits and therapy sessions, but we had to scrape, borrow, and budget to keep a roof over our head and food on the table. We have an amazing support system made up of family and friends. With out their help, we would not have been able to survive our first year raising a child with special needs (or our second year).But, what about families that receive a new diagnosis (or are waiting for one) that are not as fortunate? Where could they go for help adapting their household budget to allow one parent the opportunity to stay home and care for their child with special needs? How can we pay it forward? And so, The BumbleBee Fund was born.
The BumbleBee Fund was established to help parents of children with special needs make ends meet. We will use the funds raised to help buy groceries, pay for utilities, and provide any other essential life needs that these families may require while they establish their new household budget on a limited income.
Please share our story with your family and friends and please consider making a donation to help other families like us.
Sincerely,
Frank and Alisa Bentley
