Episode 4 RECAP: Hope is within reach!
Finding Hope for "Frizzle" Kids with Chrissy Green
There are many elements of this episode that have arrested my attention. I am sobered by the reality that the frizzle kids and their families face. I am in awe of the fortitude and perseverance that these parents have shown in pursuing a cure. I am desperate with them for that cure to materialize and bring restoration to children worldwide. I am deeply grateful for Chrissy’s willingness to share candidly about their experience and invite all of us into coming alongside and carrying the burden.
Here are some takeaways from my time with Chrissy:
FRRS1L has been found all over the world - it is not specific to any particular ethnicity or people group.
There are some markers early on for FRRS1L; but, in many cases, children seem to be developing normally and then hit massive regression. This would be such a difficult, heartbreaking experience to walk through.
Even after regression, the children are able to control their eyes. They are able to communicate (via low and high tech options) with their caregivers and families by using their eyes.
Even if you aren’t currently connected to someone with a genetic disorder, it is likely that you one day will be. Interestingly though, seeing forward movement in one area of gene therapy positively impacts other areas. Their success is success for humanity.
When I think of winter, I will think of a FRRS1L kid about to fight for their life. This puts the routine cold in perspective. It doesn’t invalidate the disruption and difficulty that normal ailments bring; but, it provides perspective.
The biggest gift you can give a FRRS1L family is to see and value the life of their kid.
If they had all the funds raised today, they could have treatment in 18 months.
It is my sincere hope that everyone who engages this episode will be compelled to help me spread awareness and invite others into seeking treatment for these children. If you haven’t already, take 7 minutes to watch the informational video that Finding Hope for FRRS1L has produced in collaboration with Story Path.
Follow the journey on Instagram @everlyshope and @hope4frrs1l.
Hope is within reach!