The story of H.O.P.E.

Hello World, my name is Debbi and This is the story of how H.O.P.E began…

In 2020 I had a lot of time on my hands. I had been forced to retire from a job I loved dearly, because I had been diagnosed in the late stages of Multiple Myeloma; an incurable and painful type of blood cancer that destroyed my bones. Although treatment had stabilized my condition, I was in constant pain and couldn’t work. In addition, I was immunocompromised and couldn’t risk exposure to COVID 19. I had been a special education collaborative teacher for the science department at our local high school. My job had been to not only teach science along with the content teacher, but to make accommodations and/or modifications for students who had Individual Education Plans due to a learning disability. It had brought me so much joy to empower students of all abilities and needs to access the curriculum and succeed in class!! Showing them how to reach their highest potential in spite of low expectations from teachers, family and their community was so exciting. Most often they just needed someone who believed in them, listened to them with patience and took the time to understand their personal learning style.

In addition to spending the past 38 years working in education with children of all ages and abilities, I was also the mother of a 32 year old with Down Syndrome. My daughter, Leah, was my inspiration everyday since she had been born in 1987 and she had taught me more about the meaning of life than any other person! In fact she was the motivation that forced me to get up everyday in spite of debilitating pain, constant nausea, and overall weakness. Her simple wisdom and loving hugs all put everything into perspective for me.

One day as I was perusing social media I found a support group on facebook for parents of children with Down Syndrome and I began to connect with parents of young children. It was so wonderful to reach out and give them support. I thought about how alone I had felt when I was raising my daughter and what it would have meant to talk to other parents and especially ones who had raised children who had grown up healthy, happy and led full lives. It was just so rewarding and I made many friends, virtually.

One day, while online I met a woman named Biby from Nigeria. She had a ten year old daughter who had Down Syndrome. In Nigeria, she explained, children who had Intellectual Disabilities were still stigmatized and shunned. There wasn’t good education for them and they were often put out of their family into the streets. I found out that in many countries in Africa children with special needs are often thought to be cursed, evil or a punishment from God for their parents wrongdoings.

Biby told me about a ten month old baby with Down Syndrome who needed heart surgery and died because the family couldn’t afford it. It just broke my heart and I knew I had to do something. Biby was marching in the streets with her family, her daughter and other families so that her community could see that they were people just like everyone else. She started a small school where her daughter could go and learn and she advocated relentlessly to educated people in her country. I told her I wanted to help in anyway I could. Together we came up with a plan and for the past two years I have met with teachers and parents in Nigeria to do trainings on best techniques in education for children with special needs. I have met with teachers, through zoom and done trainings on the use of pictures and sign language in communication, the effects of Sensory Integration Disorder, teaching reading, math and art therapy and much, much more. I have met with many parents to offer workshops or support and my daughter, Leah, has joined often too! I have also recruited speech and occupational therapist, as well as other special educators to join us to answer questions when needed.

As this became a successful collaboration, which was so gratifying for all involved, including myself, the students, their parents and the teachers, I began to reach out to others that I found in the support group online. I found Seline who is a mother of a five year old boy who has Down Syndrome and lives with her family in Kenya. She couldn’t afford therapy or school for him and was concerned that he wasn’t talking yet. She wondered if there was more she could do to help him. I began to communicate with her through virtual calls so that we could talk and I could share educational materials. I met her five year old son Shawn, her ten year old son Shannon and her husband Paul. We spent many hours communicating and I shared information about teaching him to language, how to handle behaviors and even how to grow a vegetable garden that would eventually supply them with food to eat.

I also met Charles, who is from Uganda and goes out into his village on weekdays looking for children who have special needs and are living in very difficult circumstances. He introduced me to Robina, a bright and beautiful 11 year old girl, who has Down Syndrome and lives with her grandmother. Robina was very sick and needed a doctor because something was wrong with her liver. Her skin was turning yellow and she was very lethargic. Charles had been going to see her weekly, teaching her basic educational skills and bringing some much needed supplies. He had reached out to the world through social media to seek help for Robina and was able to get her medical help and she is now thriving and back at school. Another young man Charles met in his travels was a homeless teenager who had Down Syndrome. He was living in the streets, was addicted to drugs and had no where to go. Many children in Uganda who have special needs are put out by their families. They can’t afford to care for them or they don’t know how. Some think the child is evil and they are afraid that they will be shunned in their community if they keep them. Other times they send them to live with grandparents who are already overwhelmed by poverty. Charles goes out into these communities to find the most neediest children to help, sometimes risking illness and harm to himself.