Miles for Madison

Madison is a spunky and quick-witted little girl, who turns 4 years old this March.

She is the younger sister to her sweet elder sister Emma; and has many loving family and friends who have been her biggest cheerleaders and supporters!

While many things make up who she is, one part of her story is that Madison has Diplegic Spastic Cerebral Palsy. [Diagnosed just before her 2nd birthday; diplegic meaning effecting two limbs (both legs); spastic (the most common type) referring to the muscle tightness; and CP as what we’ve come to know is an umbrella term for a brain injury before or during birth.] The injury doesn’t change over time, but as a child grows older some symptoms may become more apparent. Madison was born full-term, with no known complications but, as she grew through her first and second years of life, we noticed some delays with her gross motor skills and most recently was diagnosed with a neurogenic bladder. We enrolled her in early intervention programs and have kept her in Physical Therapy. She took some of her first steps at close to two years of age. Her Great Grammy (whom she just so happens to share a birthday with!) gifted her a purple Nimbo posterior walker which has given her more freedom and support. Though she is mobile without the walker, and overall considered mild on the CP scale, Madison faces daily struggles and countless doctor appointments, which she meets mostly with smiles.

In February, Madison will undergo a neurosurgery called Selective Dorsal Rhizotomy (SDR). SDR involves going in through the spine and finding and cutting the sensory nerves in the cord that are causing muscle tightness in the legs. We are hopeful that this surgery will prevent future issues like muscle contractures and overall lead to a less painful daily life, though they say it can take a full year to fully recover.

It doesn't seem like a coincidence that Madison was born in March! March is National Cerebral Palsy Awareness Month, and Cerebral Palsy Awareness Day is celebrated on March 25th. CP is the one of most commonly diagnosed childhood motor disabilities in the U.S. It is estimated that over 760,000 people in the U.S. (including children and adults) are affected by at least one symptom of CP and yet, it is one of the most misunderstood and underfunded conditions. There is no "cure" for CP, but awareness and early intervention are key.

With the help of your donation, we are hoping to help with Madison’s medical financial needs following her surgery and make a contribution in her name for Cerebral Palsy research, as well as advocacy and support services. On March 25th we invite you to participate in a virtual walk-a-thon “Miles for Madison” to show your support and bring awareness to Cerebral Palsy. Wear your green and walk a mile with friends and family. Don’t forget to please share on social media sites with the hashtag #milesformadison !

As we have navigated this journey through diagnosis and treatments, it has been helpful to read others' accounts, though no two people with CP are exactly alike. We hope by sharing Madison's story, we can help others feel less alone, normalize differences, and hope that everyone will recognize the need for accessibility and to show compassion to all. Thank you for your support of Madison and for being a part of our story!

#milesformadison

#CPstrongGirl