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You may have heard about Erin's World, but do you know about Erin's Journey?
This is the story behind Erin's Journey...
Everyone says in HINDSIGHT or if I had known then what I do know…
Erin was like any typical child, she loved playing outside, going to the movies, horseback riding, singing along to her favorite Disney soundtracks, dancing, participating in runway shows & Broadway buddies, going to the mall and walking up-town to get ice cream.
"Feb 27th 2016, my daughter Erin called out for me because she needed help. When I turned to look at her she was trembling all over and fell to the floor. She got back up pretty quickly and I took her to a chair to rest. The rest of her day was pretty normal but she seemed weak. Monday, I sent Erin to school with a note for her teacher explaining her unusual weekend. Erin came home with a note that day saying she had a rough day, fell twice, and complained of a headache so bad that she had to lay her head on the desk.
I took Erin to the doctors first thing Tuesday. Her doctor said that the Doxycycline could cause headaches and muscle aches, so we stopped it, thinking this would be the remedy.
Wednesday, I received an email from a parent telling me they lost their daughter three years ago. His daughter never needed glasses but loved the Specs4Us mission and if his daughter required them, he was thankful there was a resource readily available. I wrote back instantly thanking the father and offering my condolences as I was saddened to hear about the loss of his daughter. He responded back, that his daughter passed away from a brain disease called Moyamoya and urged me to get my daughter checked. My initial reaction was, “who is this person and why are you telling me this?”. Since I had never heard of “Moyamoya”, I googled the word and thought the symptoms were shockingly close to what Erin was experiencing.
Thursday, when Erin got up for school, I noticed she wasn’t acting right, she seemed very confused and didn’t have good balance. I quickly decided to cancel my flight to attend the DSAIA conference and took her to the ER. I drove Erin to the closest hospital that had a Children’s Trauma Unit, as I knew my daughter's subtle signs were red flags after the knowledge of Moyamoya, that previous day. The first doctor said, “She probably has the flu, you know how that is.” I thought, “She’d never had the flu before, so maybe that could be a possibility”...however I did mention Moyamoya to ease my mind. The first doctor, basically laughed it off, saying it was so rare. Soon after all test for flu came back negative a new doctor asked to get a CAT Scan. Once completed, the results showed a stroke on the left side and it was not her first stroke.
They said about a year and a half earlier she had experienced a sizeable stroke on the right side too. A year and a half earlier, Erin spent 13 days in an ICU unit with aspirated pneumonia. The staff told me she had a “panic attack” and must have aspirated when she threw up, now to find out this was Erin’s first stroke and could have been the initial signs of Moyamoya. No one ever mentioned a CAT scan or MRI to check for a stroke because Moyamoya was not on their radar yet signs of a stroke were present.
A research paper by Dr. Ed Smith from Boston Children’s states 24% of all the patients with Moyamoya have Down syndrome and in 1994 a report stated that 3,600+ cases were reported in the US. With this data we could reason that 900 cases were most likely individuals with Down syndrome. Had I known to watch for certain signs earlier I could have found out a lot sooner resulting in early treatment. We know our children’s behavior best and any changes in that behavior should be brought to a doctor’s attention. I personally blamed my daughter’s speech decline to some of her hearing issues not knowing it had more to do with the TIA’s (mini strokes) she had been having for years.
Again we can all say if I had known then what I know now….. let’s start informing others of this nasty disease and the signs of a seizure, stroke or TIA. I don’t want to see other parents go through what my sweet Erin or my family and I had to endure all because of lack of information. Erin gained her wings July 19th, 2019."
- Maria Dellapina
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