✼ Downs Syndrome Program Tapley Family are Passionate Advocates Boston Children’s Hospital’s Down Syndrome Clinic and Heart Center
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here is no greater anticipation for parents of a newborn child than to hear the doctor say that they have a healthy baby. For Susie and Andrew Tapley, whose daughter Mae was diagnosed with Down Syndrome shortly after birth, this was not the case. Little did they know, they would be in and out of Boston Children’s Hospital for the months to follow, commuting from the D.C. area to get the best care possible for their young daughter. Shortly after Mae was diagnosed with Down Syndrome, the doctors discovered that this brave little girl had a hole in her heart and pulmonary hypertension that needed to be addressed immediately with open heart surgery. This began her journey down the road to recovery, as well as the family’s move to Brookline to be near Boston Children’s and close to family. The Tapley family, including a now healthy and happy two-year-old Mae, has been a passionate advocate of Boston Children’s Hospital’s Down Syndrome Clinic and Heart Center ever since. Sunday June 11th, supporters of Mae joined together to walk 6 miles in support of the hospital where she continues to receive extraordinary care and compassion. Two years ago, the family was able to raise an impressive $23,000 just a week before the event. Support for Mae kept growing, and this year Miles for Mae raised over $72,000 for Boston Children’s. Mae’s mother Susie proudly explains, “Boston Children’s Hospital literally saved [Mae’s] life.” She describes her experience at Boston Children’s Hospital as “such a
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Boston Parents Paper | July 2017
welcoming, lovely place,” that gave her endless support and resources during an otherwise daunting and overwhelming time. The Tapleys now dedicate their efforts to raising not only funds for the hospital, but also awareness of Down Syndrome and the incredible potential for children with its diagnosis. It is with this dedication and the drive to help kids like Mae that the Tapley family and friends walk year after year. The Tapleys were joined at the 15th annual Eversource Walk by over 5,000 walkers all with the same goal: to do their part in helping to fund the exceptional care and groundbreaking research that are synonymous with Boston Children’s. Since its inception, the Eversource Walk, Boston Children’s Hospital’s largest annual fundraiser, has raised over $17.5 million to provide care for children and their families.
Mae and her family also show their support for Boston Children’s Hospital by helping to fund a patient liasion program in the Down Syndrome clinic, which employs adults with Down Syndrome to greet patients and offer support and guidance during appointments. Through this program, the Tapleys were introduced to Nate, the hospital’s first full-time employee with Down Syndrome. Nate serves as an inspiring role model for Mae and her family, as well as for countless others visiting clinic. Mae’s touching story is one of many successes due to the care provided at Boston Children’s Hospital. For more information on Boston Children’s Down Syndrome program, please click this link: http://www.childrenshospital.org/centers-and-services/ down-syndrome-program