Contributed by Emily’s mom Elizabeth.
Emily is an AMAZING little girl! At 5-years-old, she is comfortable telling people she has a disability and that her muscles work differently than theirs do. Emily was born three months early and diagnosed with cerebral palsy when she was about a year and a half old. Both Emily and her identical twin sister, Sarah, were delayed in reaching their milestones, but Emily’s delays were more pronounced.
Emily is super determined and does everything she can to keep up with her peers. This requires A LOT of hard work! Emily does about 6-7 hours of therapy a week, a combination of PT, OT, and aqua therapy.
Since she was about 3, Emily has received intermittent Botox injections to loosen her muscles and give her some additional flexibility and mobility. For example, she learned to walk with lofstrand crutches within 6 months, a task they rarely teach children her age given its complexity and the output of energy required to do it.
Nemours is AMAZING! They treat children like family. Everyone we met is so caring. You can tell they love their jobs and the children they care for. Dr. Wade Shrader is incredible. He has children who also have CP, which makes his perspective incredibly helpful. He is always willing to share his experience as a parent which is invaluable! He connects with Emily in a special way and includes her in the conversation. He is what a doctor should be, and we feel blessed to have both him and Dr. Maura McManus as the surgical and medical experts on Emily’s care team.
