Our friend Hilary (Maggie’s veterinarian and acupuncturist who helped Maggie live the last 6 months of her life with dignity and in less pain), has two children, a son and a daughter. Her daughter, Carisse, had been born with some health difficulties; mainly in digestion which later led her to have some developmental delays in both motor and speech skills. By the time Carisse was one year of age, it was obvious that something was wrong and after numerous unsuccessful medical and physical therapy interventions, Carisse was diagnosed with mild hypotonia. Hypotonia is typically seen in children with cerebral palsy. Hilary and her husband are thankful that Carisse’s MRI did not show lesions which would indicate CP, however, they had to find a way to address her developmental delays as they were finding it difficult to communicate with Carisse and teach her. Luckily, they found a state-funded program for Carisse, Beginning Steps to Independence in San Jose, which provided therapy and services targeted to both her motor and speech delays.
Hilary and her husband had read about the program, and were touched by the testimonials submitted by parents of children with motor disorders, such as cerebral palsy, hypotonia, and various myelopathies. Several families have relocated from other states to this area, for the sole purpose of seeking out this unique program.
Carrise, now two years old, started attending the BSTI school two months ago (after receiving home therapy for 1 month). Since being in BSTI, Carisse has made amazing strides, and getting stronger every week. More importantly, her cognitive and receptive language skills improve daily. In general, the quality of life for both Carisse and the entire family has improved tremendously, as they are now able to communicate with Carisse, and learn how to challenge her physically at home. It was quickly obvious to Hilary and her husband that they had finally found a program that WORKED!
The BSTI program was developed in Hungary, and specifically targets children with neurological conditions leading to motor disorders. Instead of using traditional physical therapy or occupational therapy to work around the disability, the program employs Conductive Education, techniques to stimulate pathways in the brain, helping children to communicate and become mobile, leading to truly incredible results.
At the moment, Beginning Steps to Independence school is in great need for donations to keep the school running and accommodate more students. The highly trained staff (many of whom are from Hungary), as well as the parents and children, are highly motivated and very enthusiastic to keep the school open, and even to expand it. They need to raise a minimum of $100,000 over the next couple of months. In addition to the obvious need for money, they need help from attorneys specializing in non-profit organizations, people with a background in accounting and finance, and other volunteer activities.
Although Carisse’s form of hypotonia is mild, many of the children at the school have more serious disabilities, and the thought of them having to undergo the often traumatic process of changing therapists/programs, and no longer having access to the “conductive education” techniques is of great concern, especially since this specific program has proven to be so successful.
Scott and I have pledged a good chunk of change to this effort, which his company will match. I wish I could do more. After all, Hilary, who faced these daily challenges with her daughter, drove to our home every few weeks just to give Maggie the help she needed and held our hands through her final days. But this is Carisse, a child, who needs help, along with so many children with more severe motor delays that actually need this stuff. I cannot imagine having the rug ripped out from underneath the families of those who are truly benefiting from this program.
If you need to feel good, this would be a good cause for you. If you want to think globally, but act locally, this is a good cause. Please click the links below to learn more or donate.