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Rachel’s Story
Our sweet little baby Rachel, who is the youngest of four children, had a normal delivery nearly two and a half years ago. Rachel had little startle reflex type jerks from day one, but the doctors all said not to worry. Rachel was almost six months old when we noticed that she was not developing as our other children had; she wasn’t sitting up, rolling over, reaching for toys, or making simple baby sounds like a normal six month old child should. We had her evaluated by three professionals, with the resulting consensus being that she had some form of Cerebral Palsy.
We had just begun to deal with Rachel having CP when at seven months, she started having seizures. She was having clusters of single jerks that lasted about 12 minutes with up to 70 jumps per cluster. Her EEG showed that she was suffering from Infantile Spasms (IS), one of the rarest of all forms of epilepsy, for which there is no cure. It is found in about 2 in every 10,000 childbirths. She was immediately admitted to Texas Children’s Hospital to begin a course of high-powered steroid injections called ACTH. For seven weeks we had to give Rachel shots every day in hopes of stopping the seizures. It did stop the clusters; however, the single jumps came back as soon as we finished the injections.
During the last two years, Rachel has been in and out of the hospital so many times that we virtually knew the names of all the nurses. In April of 2003 she spent eight days in a comatose state and nearly died during a 14-day hospital stay. She has had seven EEG's, with the brain waves always very chaotic. Many alternative courses of medicines have been tried with no success. As a last resort, her Neurologist put her on the specialized and expensive anti-seizure Ketogenic diet. This diet has been the most effective, with a significant decrease in seizures, down from 400 to 50 per day. We we're recently told that even if the seizures completely stopped today, Rachel will still never walk, talk or feed herself, due to the brain damage which has already occurred.
We have spent a small fortune on her treatment over the last two years for doctor visits, hospitalizations, medications, equipment (i.e. wheelchair) and other medical services like home health care. She is only 28 months old and her condition has nearly drained our savings. We are not sure how we will continue her various treatments for the rest of her life. When she turns three, we will be required to start paying for physical therapy, speech therapy and occupational therapy on a weekly basis. We really need increased home care, such as respite care for the nights. Amy hasn’t had a good night’s rest in two years because Rachel has seizures during the night. As Rachel grows and becomes too heavy to carry upstairs, our home will likely require alteration to accommodate her lack of mobility. We are very thankful to the Bright Light Foundation for choosing Rachel to be one of the beneficiaries of this year’s fundraiser. It will make things considerably easier.
Thank you from the bottom of our hearts,
Jim and Amy Regitz.
Rachel's Voice
My name is Rachel Regitz ; I am 2 1/2 years old. My granddaddy is writing this because I can't talk yet. The doctors say that I probably will never walk or talk, due to a very rare disease that affects approximately 2 in 10,000 infants. At the age of approximately six months, I was not developing normally, soon experiencing upwards of 300 seizures per day. Neurologists decided that it was Infantile Spasm Syndrome, a rare form of epilepsy. The longer the seizures continued, the greater the mental retardation became apparent. After exhausting every known medicine, the Ketogenic diet has finally helped with the seizures; and it remains to be seen how much brain damage has actually occurred. There are years of extensive therapy ahead of us, which, if the past is any indication, will likely be emotionally and economically draining.
My granddaughter Rachel has changed the dynamics of this family, causing us to look at life from a totally different perspective. I choose to be optimistic that there is a silver lining behind this cloud; I know that one day, with God’s help, Rachel will be able to speak for herself.
