Declan is 8months old currently. He is a twin and when he was born it was pretty clear there were some differences between our two boys. Both were in the NICU because they were delivered slightly early, both on feeding tubes for 10 days, then they both came home. However, Declan didn’t open his eyes for his first 3 days of life. Doctors said it was swelling at first, because he was doing fine otherwise. Around day 4-5 he wasn’t looking around, wasn’t blinking, had no facial expression, had a very inconsistent latch. We asked a lot of questions and thankfully delivered at MGH in Boston where we had a great team right away. They initially believed it was a Moebius-like syndrome, but wouldn’t know for certain until genetics / MRIs came back. His first MRI was done at 6 days old. There were no conclusive answers so we moved onto genetics. It took a few months to come back, but we got our answer: Tubb3 e410k. Congenital ptosis, CFEOM, hypotonia, weakened facial movements. Declan has been in OT since 3 months old and has exceeded everyone’s expectations. He can see, he can roll, play with his brothers, he laughs, he’s starting to have a somewhat smile. He’s very smart and does not let his differences keep him from keeping up with his twin brother or big brother. He is very close to crawling and walks around in his walker. We don’t know what the future holds for his vision, because he can’t blink, we aren’t sure if correcting his ptosis is possible, but we have a wonderful team of doctors at BCH and MGH. Declan is a fighter and such a brave little guy. We know he will continue to exceed all expectations and live a fulfilling, happy life.
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