Do you know Rett at all? Do you know a girl who possibly has Rett? I hope it comes on your radar, because it is close to my heart. What is it?
Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.
From the Rett Syndrome website
A good friend of mine, Jeff, has a daughter who is in her early 30’s. But Charlene is not the “normal” 30 year old you would come across. She has Rett Syndrome, a genetic mutation of the MECP2 gene on the X chromosome. She can’t quite communicate through words and she needs assistance to do many daily tasks. But God is in her. She brings so many smiles to her family and she herself experiences many things and has joy doing child like things…her Rett has not stopped her from living at any time.
However, I know her dad and her mom yearn for a cure so that Charlene can thrive even more, and they yearn for a cure for other kids. They yearn and have a passion for something better, something that we really hope can be cured. October is Rett Syndrome Awareness month, and I think this is a great time to recognize the amazing hearts of the parents and the amazing lives of those with Rett, and to see what they are teaching us about Gods world.
Rett kids move fairly similarly through stages, which when understood correctly helps us see how to best interact with them:
What are the stages of Rett syndrome?
Stage I: Early Onset Stage
Age: 6 months to 1.5 years
Stage II: Rapid Destructive Stage
Age: 1 to 4 years
Duration: Weeks to Months
Stage III: Plateau Stage
Age: Preschool to adulthood
Stage IV: Late Motor Deterioration Stage
Age: When ambulation is lost (those who never ambulate move from Stage II to IV, 5-25+ years
Duration: Up to decades
These stages don’t have to be what we are resigned to. I work at Texas Childrens hospital in Houston Texas, and we have a research study (probably more than one too) ongoing and my friend is passionate about this as an opportunity. Opportunity to inform others- many parents of Rett kids have to explain their child’s neuro-development condition to medical providers. Opportunity to treat these children as gifts from God and make the unfamiliar familiar and treasured. And an opportunity to push for a cure, or to push for the vision of a child and many children being fully healthy and fully living into their lives, whether that child is cured or not.
Consider looking at the RettSyndrome.org website, and really being aware and supporting the cause. Because awareness means that when you come across these kids and their parents, you too can see the love, the dignity, and the presence of God amongst these families.