About This Blog

Stellan was born on February 22, 2012, about ten days late, but from as far as anyone could tell, completely healthy.

But developmental delays led us to get a brain MRI when he was six months old, which revealed a rare congenital brain malformation called Pachygyria, which is on the Lissencephaly spectrum. In layman’s terms, Stellan doesn’t have enough folds on the surface of his brain, and his case is particularly rare because of the area of the brain that is affected.

There is no cure for his condition, though we are hoping that extensive physical, occupational, and speech/feeding therapy will enable him to eventually walk, talk, and feed himself – the certainty of which is all unknown at this point.

Genetic testing for the most common causes revealed nothing – all the genes tested were completely normal. We are now awaiting the results from a second phase of testing in the hope that we will eventually understand more about Stellan’s condition, his prognosis, and our options for our family in the future.

In the meantime, Stellan is developing and growing in his own time, and every smile melts our hearts and each tiny bit of progress is celebrated as a major victory. While he’s certainly behind developmentally, he’s working hard to catch up, and we are doing everything in our power to give him the best possible chance at life.

We have created this site to keep family and friends updated on Stellan’s progress, to share our experience, and to connect with other families with special kids like ours.

Comments

t'ai jamar
Reply

this story is about love. a testimonial to true, unconditional, righteous, full-on LOVE. N-to-da-Q, y’all are some love-filled mutha-truckers… and i’ve got your back. oh, yeah when you get back– to the NYC, i’d like to work, literally on your back (not the universal one, but each of your individual backs). with ALL of MY L.O.V.E. tia t’ai (aka, titi) xoxox

noelle
Reply

Thanks T’ai. Ready for a back massage anytime. :)

Rachel
Reply

I’m so moved by your story, Noelle. And Stellan is such a beauty! You’re a great writer too, so I hope the blog is a cathartic creative exercise for you.

Christine
Reply

Noelle – much love and hugs to you and your family from North Carolina. My son is 3.5 months old – can’t even imagine going through what you are going through – you are so brave and strong! Glad you are getting smiles and that Stellan is writing his own book :)

Noelle
Reply

Thank you Christine. I hope your little man is bringing you loads of joy!

Tarun
Reply

Wish your beautiful Lil prince a v happy birthday in advance. It is so difficult to stay positive always as the parent of a special needs child. I will be praying for Stellan and hope that you always find the strength and positivity to be wonderful understanding parents to a special gift from God – Stellan.

Noelle
Reply

Thank you very much!! We appreciate it.

Holly
Reply

Noelle, I admire your strength. I have been working as a nurse for over 20 years and if anything I learned is that if there is love and support from family and friends, miracles do happen. I have seen people recover from impossible conditions thanks to continues support from their loved ones. I only today found out about Stellan’s condition but was very happy to read about the progress he has been making. Go Stellan! A lucky boy who has such amazing parents.

Noelle
Reply

Thank you Holly. Your kind words really mean so much to us. I hope you’ll get to meet Stellan sometime soon!

Jill Seagren
Reply

Noelle: We are far away in distance but your family holds a special place
in our hearts. Your enhanced life with Stellan shows how special
you and Quentin are as parents. I look forward to reading your blog
monthly, sharing a little bit into your full lives.

Noelle
Reply

Thanks so much Jill. We really appreciate your comments and your support. I’m trying to post more than monthly, but between work and Stellan it’s not always easy. :)

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