Madisen is a bubbly, bright 10-year-old with a great smile and a shock of beautiful red hair. She loves to sing and swim. Her favourite subjects are French and Art. She works hard to maintain a solid B average –
– an impressive accomplishment because her medical challenges mean she misses many days of school.
Her mom Jodi affectionately describes Madisen as “feisty and strong-willed”. She has to be. Madisen has been living with painful physical challenges that most of us would find unbearable: a condition that causes her bones to shatter from the slightest bump or pressure, along with epileptic seizures. Last year alone, she endured two broken legs, a broken elbow and a broken ankle, among other fractures.
Fortunately, your Easter Seals support provides equipment that helps her live with more comfort and independence –– and less pain. At 10 years of age, she has even started giving back to her community as the driving force behind a new children’s choir.
Madisen has always faced an uphill battle. As a baby, she suffered seizures and was in constant pain. Her doctors weren’t sure what was wrong. The lack of a diagnosis increased the stress on Madisen’s mom, Jodi. At the time, she was a single mom with two older children. She describes Madisen’s health challenges as “overwhelming”.
By three years of age, Madisen’s bubbly personality was shining through. So was the pain she was in.
When a neurologist asked Madisen how she was, she answered: “My back hurts” –– a heartbreaking statement to hear from a preschooler.
Shockingly, an MRI revealed that all the vertebrae in Madisen’s spine were compressed. But no one understood why her back was broken. She was put into a permanent back brace and continued to have seizures, triggered by the unremitting pain.
At five years of age, Madisen finally received genetic testing that revealed she has Osteogenesis Imperfecta, also known as “brittle bone disease”. The genetic mutation that caused Madisen’s condition is so rare, she is considered one-of-a-kind.
Over time, the challenges of this cruel condition grew extreme, causing Madisen’s bones to break spontaneously. Soon Jodi could no longer lift her daughter out of a tub. At the age of seven, Madisen could not even enjoy a soothing bath.
That’s when Easter Seals supporters helped transform Madisen’s life.
Thanks to Easter Seals donors, Madisen’s family received a much-needed bath lift, and also a stair lift and porch lift so she could get around the house –– and out of the house –– on her own. An adjustable hospital bed gives Madisen a comfy place for sleep and recovery when her bones break. A specially equipped van means Jodi can take Madisen to swimming where she enjoys a special freedom she can’t experience in day-to-day life.
“We wouldn’t have the equipment to help Madisen without Easter Seals’ donors. Thank you!”
Madisen’s mom, Jodi
Madisen’s great joy, though, is singing –– so much so that she inspired a group of kids with special needs to join with her to form a choir. Singing is a way Madisen can express herself without worrying about broken bones. It’s also empowered her to “give back” to other kids with physical challenges.
One day, she wants to become a Child Life Specialist to help kids undergoing painful or frightening hospital procedures. Madisen knows just how that feels.
Your donation will give these children a chance at independence and fulfillment, despite their physical disabilities, just like Madisen.
Please make a gift during our annual Easter Seals Campaign. Thank you for helping kids BE KIDS!