Savannah is a seven-year old girl living in Salem, MA with her mother, Lacey and her father, Mark. She loves music, good food, and being outside. She is happy and very loved by her two doting parents.
We invite you to read more about her story and support Savannah through a purchase from our shop where every purchase will help cover the costs of therapies for Savannah not covered by insurance. You can also subscribe to our podcast and hear our interview with Savannah’s parents releasing May 10th.
“I’ve got this little girl that’s taught me more about life than anyone will ever teach me. It’s a continuous journey.”
When Savannah’s mom, Lacey was pregnant with Savannah she had genetic testing done and everything came back normal. So, even though she had no reason to believe there would be any issues or complications she reports that she did always suspect something was off; shortly after Savannah was born she was diagnosed with hydrocephalus. She had a large hematoma on her head and had to be in NICU for 42 days. It was determined at some point she had a stroke and had the large hematoma from being stuck in the vaginal canal, which resulted in a brain bleed, which resulted in the hydrocephalus.
Around eight-months old an early interventionist expressed concern regarding Savannah and she was sent to an ophthalmologist where she was diagnosed with Cortical Visual Impairment (CVI). CVI is a brain-based visual impairment. Her visual pathways were damaged. Lacey shares, “Instead of it being something that is correctable it is brain-based so you work on different strategies to help her.”
At almost four-years of age, Savannah was initially diagnosed with Ogden Syndrome, but has since been put under an Naa10 umbrella. She is 1 of 25 in the world with her exact mutation. According to Lacey, “It is a completely rare syndrome that affects everything for her – her speech, she’s got a ton of movement, she’s non-verbal. To me it’s what makes Savannah, Savannah.”
Savannah was also diagnosed last year with Epilepsy and Eosinophilic Esophagitis (EOE). EOE is a chronic allergic inflammatory disease in her esophagus. In the summer of 2018 she was diagnosed with Epilepsy after Lacey noticed her eyes rolling. Savannah had an EEG done that revealed abnormal spikes and waves, which Indicated she was having seizures.
Lacey shares on her blog, “She is happy despite her challenges and truly doesn’t know life any other way. She works so incredibly hard to do things that come natural to most. She is a true blessing.” It is very clear how much joy she brings to her parents every day. They genuinely enjoy being around her and love being able to come alongside her and help her with whatever she may need.
When asked what advice Lacey and Mark would give to parents going through a rare medical journey Mark shares, “You just have to get out there. They’re the same people, they deserve the same thing that all of your other children or every child deserves and if you’re ashamed of it get over it quick because they’re not ashamed, they’re proud of who they are.”
Lacey’s responds, “I love her for who she is and I embrace the journey wholeheartedly. Surround yourself by people who get you because you can’t survive probably without that.”
Time to get loud shouters!
Throughout the month of May we will be shouting love for Savannah and four other kiddos with their own special and unique stories. We hope you will join us in getting to know these five incredible families.