Logan, 3

“He is happy and we have learned a whole new kind of happiness, living with and caring for our little dude and his rare disease.”

Logan was born with a rare disease. Hydrocephalus itself isn’t actually rare, but Logan’s version added a little twist, some spice to the standard hydro diagnosis. He has a condition called L1 Syndrome, a genetic mutation on the L1 gene of the x-chromosome. It’s a lot of complicated words that just mean he has a genetic form of Hydrocephalus that he inherited from me, his mother. The guilt of that alone was crushing, but something I have worked to move past. This rare disease, L1 Syndrome, has impacted all of our lives in the most bittersweet and beautiful way. During the pregnancy and in the first year of his life, things were complicated and scary. There was an appointment with a specialist, doctor, or some form of therapist every week. We received bad news after each bad appointment. Some professionals tried to stay hopeful and cheerful, and some were very blunt about a gloomy prognosis. It was hard to stay positive during pregnancy and those first trying months of life after birth, VP shunt placement at 14 hours old, a lengthy NICU stay, and what felt like constant battles turning me into a medical advocate for a tiny human whom I knew was going to prove them wrong. I didn’t really know, I just really hoped.

It was difficult to keep hope going as Logan was very slow to meet any milestones. Everything came later if it came at all, including interacting with us, smiling, eating, etc. After a little time and a lot of help from our amazing, exclusive, and relatively small number of L1 CAM parents from all over the world in our Facebook group; we learned that Logan was creating his own milestones, breaking the mold, doing everything he needed to do, at his own pace. Coming to this realization brought amazing peace. After 6 surgeries including 2 brain surgeries, an eye surgery, and several others, we have settled into caring for Logan, leaning on our community, and understanding the beauty in this little human.

Logan will be 4 this year and there is no person who brings our family more joy than this guy. He does not talk, but he communicates everything he wants to communicate through touch and reach, precious hums, and the occasional little growl. He is legally blind, but he wears glasses and works with his vision teacher and overcomes those challenges like a superstar. He does not walk or crawl, but he will lean and reach and stretch toward wherever he wants to go. He has learned us as we have learned him. He knows how to aggravate his siblings who are 19, 17, 14, and 12. Yes, he is the youngest of 5. He is sweet, cuddly, and loving to his mom, dad, and babysitter Ms. TC.  He loves to be tickled and anticipates when we are going to “get his belly”. Logan has a whole team of wonderful people in his corner and we call them ‘Logan’s League.” He is happy and we have learned a whole new kind of happiness, living with and caring for our little dude and his rare disease.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: natalia@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

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