Twelve-year-old Janelle loves to travel with her family and enjoys watching movies, listening to music, going outdoors, and playing with her brothers and sister. Janelle is the oldest of four siblings who grew up in a Navy family. Her father Jeremiah is a Navy Veteran, who met Janelle’s mom, Angela from South Korea, who studied in the USA and was working at the Defense Language Institute Foreign Language Center.
Janelle was born full-term, with all signs pointing to a healthy baby girl; however, at four months old she began missing developmental milestones, such as sitting up. Her parents continued to notice fluctuating changes in her development. She could speak at eight months but could not transition from laying or rolling to sitting, by 15 months her verbal skills started to decline and at 33 months old, Janelle began having seizures.
With Janelle’s decline in development and the complexity of her medical needs, she was diagnosed with Rett Syndrome, a rare genetic neurological disorder that occurs almost exclusively in girls. Rett Syndrome leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. With limited treatment options available in Japan and through the military, Janelle and her family medically transferred to Virginia and then moved to Maryland.
With Janelle’s developmental behaviors, uncontrollable seizures, and constant waking up in the middle of the night crying, her mom had a very difficult time.
“It was challenging with my family in Korea and Jeremiah in the Navy and his family in Minnesota. But I love being a mother to Janelle. She is a blessing and the most patient person ever, very strong and bright, and her presence is amazing. Whenever I tell her I love you she looks at me as if she is saying, ‘mommy I know you do, I love you too’.”
Janelle’s family learned about The Coordinating Center through a Navy social worker who identified the Model Waiver program as a potential resource for their family. Having struggled to find funding for nursing and a nursing agency to provide the hours of coverage needed, Angela says that The Coordinating Center has been a tremendous help to her family. “Sheryl, Janelle’s care coordinator was a big help with coordinating with doctors, agencies, and schools, getting nurse hours covered, and funding for medical bills.”
In trying to raise awareness for Rett Syndrome, Janelle’s parents started an adaptive bike campaign. Their goal was to raise approximately $4,900 to buy an adaptive bike for Janelle, and they surpassed their goal within 24 hours, raising over $5,600. The family had a video produced, to further their advocacy efforts and raise awareness. Janelle’s mom says “Raising awareness for Rett Syndrome in Maryland is critical because it is a very rare condition. Children with this disease are born normal and look fine when they’re young, so parents need to be aware of the possibilities and know the signs.”
When asked about something significant that the family lives by, Janelle’s mom provided the bible verse from Romans 5:3-5: Suffering produces perseverance, perseverance produces character, and character produces hope. She says “What we’re going through is a tough time and you need to have hope. It’s not on us, we’re walking with the Lord all the time and he has promised us the plans with prosperity. We don’t see it, but it will happen.”
For parents considering joining The Coordinating Center, Angela says to go for it! She also recommends parents keep track of documentation, which is so very helpful when enrolling in a new program. Angela says, “speak up with what you really need and be an advocate for your child because you know them best. There is so much out there and not everyone has the full picture, but somebody is going to have what you need, you just have to find it. Most importantly, give the whole story to the case manager so they are better prepared to help you.”
