When Simra was three months old, we were advised to obtain the necessary resources to help her develop to her full potential. Unfortunately, there are not many support groups for families who have children with an undiagnosed medical condition. I came across one in the United States called Syndrome Without a Name (SWAN)which has information about children with undiagnosed syndromes. When the undiagnosed disorder is genetic, it is a good idea to understand the principles of genetics such as deletions, mutations and aneupoidy. We found the Online Mendelian Inheritance in Man (OMIM) to be a good source of information. We also read various medical journals such as American Journal of Medical Genetics which have current research articles about various genetic conditions. These journals can be found in any University Hospital Library.We realized that being armed with knowledge may help us overcome the uncertainty.
We always asked Simra's medical team many questions about her medical condition, prognosis, recommended tests, treatments and symptom management. We realized that being proactive and willing to find more information, inspired the medical team to find the cause of her symptoms and help us make the right decisions for her.
Even though finding a diagnsosis was essential, we understood that it was more important to enable our special child to reach her full potential. This cannot be done by parents alone. Fortunately, social services are available to help parents achieve this goal. We relied on the Inland Regional Center, Department of Social Services and California Children Services to help us obtain the necessary services. California has twenty one Regional Centers which serve various areas. The Inland Regional Center enabled us to obtain the Physical Therapy, Occupational Therapy, and Early Start program benefits. The Department of Social Services along with the Inland Regional Center also gave us information about various home health nursing programs to help care for Simra at home. We felt that Simra reached her full potential and surprised many because of the love and care she received at home.
The social service structure described in this page applies to the state of California. Different states have similar social services but administered by different agencies. Please check with the Department of Social Services in your state to address the needs of your child. I also got in touch with an advocacy group Disability Rights California who explained me the differences between various home health nursing programs.
Please note that this content in this site is not intended to supplant or subvert the normal and proper process of consulting a physician or genetic counselor. We would like to share our experience hoping that parents in similar circumstances do not give up and advocate for their special child. A movie titled, Lorenzo's Oil, inspired us to fight Simra's battles and research the possible cause of her neurological problems. We learned to take one day at a time and treasured every moment with Simra. We understand that it can be overwhelming and frustrating at times. Simra did show us that children with special needs are a special gift to humanity and bring a lot of happiness and joy. We thank God that He chose us to be her parents and to be part of a beautiful journey with her.