Toronto.com has an excellent article on a local couple raising money for research into infantile spasms. Their daughter, Emma, was diagnosed with the disorder, and her story is remarkable: a great doctor and a short video saved their daughter from what may have been a lifetime of suffering.
Emma’s parents happened to catch her on video looking startled and jerking her body when she was waking up from a nap. When it happened again, they became concerned.
After a thorough examination, Emma’s pediatrician told us that she was in good health and did not examine like a child with Infantile Spasms, but if we wanted, she could refer us to a specialist for some further testing. We then presented her with the video of the “spasms”; it was at that moment that she entered her office [and] called SickKids directly.
It was a marvel that she did, because children who aren’t diagnosed early can suffer severe and irreparable developmental delay.
There’s not a day we don’t think about how badly things could have ended up for Emma had we continued to think her spasms were an innocent jerky movement, had her pediatrician not taken our concerns seriously, had the team at SickKids not been as amazing and as involved as they were and continue to be, had she not had the EEG.
Daniel and Monica Greco are now hoping to raise money for SickKids to spread knowledge of infantile spasms and to fund research into the disease.