Luke's life began in the Neonatal Intensive Care Unit. We were told that Luke had suffered brain damage, and might never walk or talk, and would likely spend most of his life in an institution. But along with that horrific news we were told that he did NOT have cognitive damage!
Luke was diagnosed with Dystonic Quadriplegia Cerebral Palsy, as well as the speech language disability, Dysarthria. I read numerous books on the various treatments for brain-damaged children. My research led me to the work of Moshe Feldenkrais's protégé Anat Baniel, and her method of Neuromotor movement therapy called the Anat Baniel Method (ABM).
While we were in the hospital, the social worker told us "95% of marriages will fail in these circumstances". Sadly this proved to be true for us. In 12/07, I made the decision to leave my marriage and become a single mom to my children. It would take 4 years for the divorce to become finalized and I was awarded sole custody of my kids.
A failing marriage and physical exhaustion had forced me to stop taking medical trips every few weeks with Luke. Miraculously in June 2015, Luke and I received a gift from Anat Baniel; she invited us to attend her first training for parents and brain injured kids. The first week back home, Luke was physically able to do 7 new things! It was the proof and motivation I needed to start ABM work again.
Luke's medical journey the last 18 months has included a significant amount of travel for ABM "lessons", the SPML surgery in Texas, and finally, Ankle Foot Orthotics on Long Island.
A work injury/disability prevents me from working anything more than part-time; not being able to be on a computer for more than 10 minutes a day, combined with my children's significant needs, has prevented me from returning to full time employment. I am responsible for half of Luke's medical expenses, with the uninsured medical including travel for Luke's care, exceeding $20,000 a year. His adaptive communication needs will add another $8300 in uninsured medical expenses in the next year. (He needs a new talk buddy computer to help him communicate)
Truthfully, I would rather do almost anything in the world other than ask for help. But I have an amazing 12-year-old son who has shown that his brain can heal.
I've never met a child who is filled with so much joy and love as Luke. He has a very special connection to music and has been MADLY in love with Taylor Swift and has recently added Adele to his all-time favorites list. His most beloved thing to do is to dance. And his dream is to walk and dance independently one day. Taylor Swift's song "Shake It Off" has helped Luke navigate literally thousands of rough moments in his life.
His medical doctors already considered Luke’s progress “miraculous” before this last year. But what has happened in the last few months has been beyond our wildest dreams. In December Luke took his first steps at walking independently and in January he took his first steps of dancing independently! He still has a ways to go at building up his endurance and technique. Yes indeed, the brain CAN heal itself! And I need to ask for your help to share this financial burden.
Right now Luke still needs help with feeding, dressing, bathing and toileting, holding books, holding pencils, dancing, and walking. But with ABM work, all of this can continue to change and improve. I should add the two things this old soul son of mine doesn't need any help with, are holding hands and giving hugs!
Luke has already impacted many peoples' lives. I know in my heart that the more his body heals, the more lives he will change for the better. Please help me to lift this boy up so he can walk, dance, talk, become fully independent at daily living skills, and inspire others.
Thank you so much for taking the time to read our story.