Life just threw a major curve ball, changing our lives from this day forward working together as a family. We're still processing the information. Certainly going to impact the direction of my personal comic project when the time is right.
For a while I didn't not know how to break this news in my comic. For now this approach will do.
Dalya is diagnosed with Prader-Willi Syndrome (PWS).
It's a rare genetic disorder that delays a child's growth development that occurs in between 1 in 10,000-30,000 people globally.
Dalya is diagnosed with Prader-Willi Syndrome (PWS).
It's a rare genetic disorder that delays a child's growth development that occurs in between 1 in 10,000-30,000 people globally.
We have yet to determine the severity of her condition via a blood test, which is in order. 14-month yet she's still unable to sit on her own, let alone crawl due to low muscle tone.
As she turns 2 she will never be able to feel full due to the absence of Hypothalamus in the brain that regulates her appetite. In some case a PWS child had overeaten to death after bursting his stomach. To this day there is still no cure for PWS.
Learning disabilities is to be expected. She may never bear children from having underdeveloped reproductive organ. Not asking for sympathy, just updating as part of my comic project, and that your Patreon contribution helps with the costs from our frequent hospital visitations.
So what now? There's nothing we can do to which that has no cure, but what we can is intervene to help train and strengthen her low muscle tone via weekly physiotherapy.
How will this development impact my comic? For now, we are all still adjusting to find the right system.
How will this development impact my comic? For now, we are all still adjusting to find the right system.
6 teeth out but no solid food as her neck control is still weak she might choke on anything other than pureed diet.
Week 3 of therapy: very slow progress but she can hold her hand out to reach for objects now and has better, longer eye contact.
Small happiness. All in due time.
Week 3 of therapy: very slow progress but she can hold her hand out to reach for objects now and has better, longer eye contact.
Small happiness. All in due time.
Until the story in my comic reaches this point of our lives, I will continue to update Dalya's progress in this style as part of the #DOAWFHD content.
