Welcome to Mabel Strong

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This group was started with the belief that every single one of us is resilient, and that our resilience can be fostered with the help and support of a community. We invite you on this journey we are one with Mabel. 

I’m Nora a 30 year old mother looking for support & getting Mabel’s story out in the world. Mabel was born December 2022 with Ventriculomegaly which was found on ultrasound at my 35 week appointment. At birth they were considered that Mabel might have Agenesis of the Corpus Callosum. So at only at 6 days old she had an ultrasound done to see, which came inconclusive that she did have ACC but to what extent they were not sure yet. We were set up to see a neurologist & genetics in the weeks to come. Mabel also was born with an “angel kiss” on her nose which started to spread as she got older from just her nose to her up her nose, head & on her chest. At her genetics appointment they were pretty sure they the “angel kisses” were now hemangeas & to see a dermatologist. 

At Mabel’s neurologist appointment she was set up to have a MRI done when she was 5 months old to determine to what degree her ACC was. In this time Mabel had done to see a dermatologist, cardiologist, optometrist & ENT. Do to the hemangeas on her nose they were concerned they were affected her eye sight, breathing. The cardiologist was do to a couple of pin size wholes in her heart. Mabel was put on medication for the hemangeas which she will be put on till she’s 18ish months to stop the rapid growth. 
Mabel had her MRI done this past May, which she did amazing. Devastating when the results came back she was completely missing the Corpus Callosum & where that missing piece was was a mass that was inconclusive to what it was. Mabel was also diagnosed with PHACE Syndrome & Polymicrogyria, so she has been referred to Boston Children's Hospital to the Vascular Anomalies Center. 
Even with all Mabel has going on she is such a strong, happy, silly loving girl. She loves to smile and giggle at everyone she sees. She’s having some trouble meeting mile stones but we are working on it along with her intervention therapist. It’s been a long 6 months but these nothing we would change.