After an eventful first pregnancy, a calm and routine 9 months was a welcome change as we prepared for our second child. Logan arrived without much fanfare in April 2009 - twice the size of his older brother who was 4 1⁄2 weeks early.

As we settled into life with two boys, Logan began to exhibit small movements from time to time that we attributed to an extended startle reflex. However, at the encouragement of some dear friends, we talked with our pediatrician about an evaluation with a neurologist. The weekend before that appointment, Logan had his first 15 second seizure, followed very closely by his second seizure. The next week we were admitted to Levine Children’s. It took almost a full day before we were able to catch any seizure activity, but once our doctor was able to see the seizure, the tone and pace of the day changed drastically.

After an EEG, MRI and multiple other tests, our sweet 3 1⁄2 month old was diagnosed with Polymicrogyria (too many small folds in the brain). We were told it would be an uphill battle, the seizures would be hard to control and Logan’s developmental delays would be anywhere from mild to severe. There were really no answers.

Logan would go on to be diagnosed with Infantile Spasms (West Syndrome), Lennox Gastaut Syndrome (LGS), Cerebral Palsy and At Risk for Intellectual Disability, just to name a few.

Our sweet boy is now 15 years old and is somewhere in the under 5 year old range cognitively. He’s nonambulatory, has a feeding tube, wears diapers, has had only brief periods of seizure freedom and still requires multiple naps a day. He has a house full of equipment including a wheelchair, stander, gait trainer, activity chair, stroller, AFOs, oxygen and vest system for lung support.

We have seen just about every specialist at Levine Children’s Specialty Center over his 15 years and grow more grateful every year for his incredible team. When he was born there was not a complex care center. We were blessed with an incredible team of therapists, case managers and specialists. But that is not the case for everyone. I can say, with incredible passion and confidence, a complex care center is an essential part of the journey of a child with a rare disease. It is vital to the health and wellbeing of not only the child, but the entire family.

We are so grateful for the incredible team at WARD’S Foundation who are working tirelessly to ensure families, who find themselves in the rare disease world, are not traveling this road alone.