“Though she be but little she is fierce” - Shakespeare -
This is the story of a Mighty Girl with cerebral palsy, our 4 year old granddaughter Maya. She is a bright shining light in our life and the lives of all who know her. In a few months she will be heading to St. Louis, Missouri, from Michigan to have a LIFE- CHANGING surgery called selective dorsal rhizotomy (SDR). Her doctors predict this surgery will one day allow Maya to WALK INDEPENDENTLY, a dream come true for our fiercely independent Mighty Girl.
I started this fundraiser to help raise money to cover costs related to the surgery and post-surgery therapies. The most pressing cost is her post-surgery physical therapy (PT). Maya's insurance only allows for 30 PT visits per year. In the first year after surgery Maya will require well-over 200 PT visits, at a significant out-of-pocket cost (each visit is billed at more than $150). Maya’s parents (our daughter and son-in-law) are always the first to help others, but are reluctant to ask for help themselves. We want them to know they don't have do this alone, so let's rally around their Mighty Girl and show them how much joy she has brought to our lives. Please take a minute to read Maya’s story and consider donating and sharing her story.
Mighty From The Start
Maya was born very early in the fall of 2013, a micro-preemie weighing only 1lb 10oz. Before her mom and dad even got to hold their sweet girl, she was rushed to the NICU in a hospital three hours away from home. Maya spent the first 87 days of her life in the NICU fighting to come home to her loving parents and two big brothers. After several scary setbacks and interventions, Maya went home without any hint that there was anything seriously wrong. It seemed like she had beaten the odds.
Once home, Maya thrived with her family’s love, meeting most of her developmental milestones right on time. However, as time went on, her mom noticed her legs were often tight and Maya wasn’t meeting some of her motor milestones, like sitting up, crawling and walking. Though the doctors said she just needed time to catch up, a mom knows when something’s off. My daughter, the best mommy, and advocate for her girl pushed hard for an MRI. Maya had her MRI just before she turned two and was officially diagnosed with spastic diplegia cerebral palsy (CP).
Showing CP Who’s Boss
Maya’s type of CP causes the muscles in her hips, legs, and feet to be tight or spastic. Because of her CP, Maya is currently unable to stand on her own for more than a few seconds, or walk without the use of walker. Despite these challenges, Maya gives it her all every day. If her brothers play baseball, she plays baseball; if her friends are climbing a snow bank, she’s right behind them in her walker. She has an incredible will and a tenacious attitude.
Every week, Maya spends countless hours in outpatient and in-home therapies to try to build strength. She often misses out on “typical” four-year-old things because she is at therapy, in the car on the way to therapy, waiting for therapy to start, at a specialist appointment, etc. Still, Maya is self-motivated to practice things like balance on her own at home. Even through the hard work, she’s smiling. If you ask her if she needs help, she always says, “no, I got it.” She wants to be mobile and she wants to walk “just like her brothers.” She rarely complains and always has a bright smile for those she encounters. We have seen first-hand how much joy she brings to those around her.
Anything is Possible
Maya has had to go through so much in her short life. She’s had multiple rounds of Botox, endured painful daily stretches, spent time in special standers for prolonged stretching, etc. to try to ease her uncomfortable spasticity. Unfortunately, these are only temporary treatments for a lifelong condition. As she grows, her spasticity will likely lead to multiple orthopedic surgeries, permanent changes to her bones and joints and, like so many others with CP, she could lose her current level of mobility.
After learning that Maya could lose her current level of mobility due to prolonged spasticity my daughter and son-in-law began searching for better treatment options. After countless appointments with specialists and lots of research, they learned about a life-changing surgery called Selective Dorsal Rhizotomy (SDR). During SDR, a surgical team will expose the spinal nerves, use electromyography (EMG) to test each nerve in order to determine which are causing the most spasticity, and then selectively cut those abnormal rootlets causing the most spasticity. This surgery is the only option to permanently reduce Maya’s spasticity, giving her the ability to live with less pain and greater mobility.
Meet Me in St. Louis
Maya has had extensive evaluations at multiple hospitals and is considered an ideal candidate for SDR. On March 27, Maya and her family will travel to St. Louis Children’s Hospital in Missouri. Once there, she will undergo SDR with Dr. TS Park, one of the nation’s leading pediatric neurosurgeons and a pioneer of this innovative, transformative surgery. After her surgery Maya (along with her mom) will begin a five-week, intensive in-patient rehab in Grand Rapids, Michigan, at Mary Free Bed. It will be followed by a year or more of intensive out-patient physical therapy back home. The intensive PT is crucial for Maya to regain strength and to train her brain and body to work together to walk. Dr. Park has predicted independent walking for Maya post-SDR (and intensive PT). A dream come true for Maya!
This Mighty Girl has had an incredible will and spirit since the day she was born. It’s been a privilege to watch her show the world what she can do. Now, let’s show this girl some love and support as she continues to shows CP who’s boss.
Thank you for taking the time to read about and consider helping our Mighty Girl!
Click to follow along Mighty Miss Maya’s SDR journey:
*This is a continuation of Maya's YouCaring Fundraiser. YouCaring was bought by GoFundMe and accounts closed (July 31st). All YouCaring donations ($26,585) have been added to this fundraiser to help us reach our ultimate goal of $50,000. We are more than halfway to our goal! Thank You! Keep Sharing!