This is Treacher Collins Syndrome: Meet Logan!

Treacher Collins has become this incredible way in which I’ve been able to meet people all over the world. Facebook and Instagram have been these wonderful mechanisms for connecting me with families who have changed me, helped me, lifted me up. I cannot wait for Landon to eventually connect with some of these amazing children and adults. These families’ stories give me the opportunity to say “me too!!” excitedly and our beautiful children are just one way we’re able to connect on so much. What’s amazing about the family I am thrilled to introduce you to is that we connected through a mutual friend and our children were born just a month apart.

The next family within our Treacher Collins tribe that I’d like to introduce you is Logan’s family.

  1. Tell us about your family!

Hi!  My name is Nicole Killeen.  I’ve been married to my husband, Matt for 6 years.  We met in college and got married 4 years  later.  Matt is a police officer by day and a volunteer fireman by night.  He enjoys boating, the beach and spending time relaxing by our pool.  I am a high school Business Education teacher in our area.   I enjoy spending time reading and relaxing at the pool and beach.  Our son Logan was born on August 30, 2012.  He is such an outgoing, loving, FUNNY little boy.  Logan will do ANYTHING for a laugh and loves spending time with Mommy, Daddy, and his 2 dogs (labs) – Bailey and Jameson.  He absolutely LOVES trains.  He enjoys when he gets to go to the train station and watch trains go by.  He also loves firetrucks and police cars and wants to be a “train driver and fireman” when he gets older!

  1. Did you know your child had TreacherCollins Syndrome (TCS) before he/she were born?

We did not know.  They thought they saw a cleft palate at my 20 week ultrasound but they brought me back in and did not see the cleft.  Logan was born WITHOUT a cleft palate but we wonder if they started to see some characteristics at this point.

  1. What has your experience with TCS taught you as a parent?

It has taught us to be strong.  It has taught us that God only gives us as much as we can handle.  Most importantly, we have learned that every child is unique and beautiful in their own way.  Logan has a wonderful personality and makes us laugh daily.  He is a character to say the least. He will do ANYTHING to make you laugh.  He always has a smile on his face which keeps a smile on ours even on the hardest days!  Our 4 year old is a true inspiration to my husband and I.

  1. What is the most common misperception about TCS, or what would you like others to know about the syndrome?

That these kids are different and are “sick.”  Logan is a NORMAL 4 year old boy with just smaller facial features and a speech delay.  He enjoys life just like every other 4 year old boy.  He plays, eats and learns like everyone else his age.  He just has to do it with a hearing aide on!  He enjoys playing and learning just like all his friends.  These children are FULL of life and live life to the fullest – they may have features that look a little different than other kids (smaller ears) but they sure are an inspiration to everyone around them.

  1. What is one thing you’re most proud of so far in being a parent of a child with TCS?

We are proud at how strong and tough he is!  He had his first surgery (Jaw distraction) when he was only 3 months old.  He has been a tough cookie ever since. You would never know when he has a simple fever (yes he runs a normal 103 fever)  and he acts 100% normal.  During Christmas break last year he fell and needed multiple stitches.  The doctor was shocked that Logan didn’t even flinch when he started stitching. He just laid there and didn’t make a peep.  The doctor said he’s the only 4 year old he has dealt with that didn’t even flinch!  He sure if tough and teaches us all about life and how to be strong!

  1. How do you feel about Wonder– the book and the upcoming movie? And do you have any special plans to see the film in November?

We personally can’t wait!  We actually did a lesson on movies and entertainment in my high school Sports and Entertainment Marketing class.  During this lesson we look at different trailers for different movies. I introduce my students to TCS and Logan during the first week of class.  During this particular lesson I reminded them about Logan and the struggles we go through on a daily basis – then showed them the trailer.  This class was my crazy, talkative class – but during this trailer EVERY SINGLE STUDENT was silent.  They listened, watched and then clapped and cheered at the end.  It was an amazing reaction that I will NEVER forget.  This made me even more excited to go watch the movie.  My best friend and I plan to go see the movie the day it releases with our husbands.  We are counting down the days!

  1. Is there anything else you’d like to share with us?

We’ve had a crazy few years.  During my pregnancy, my husband Matt was involved in a car accident while on duty (as a police officer.)  He broke his pelvis and tail bone.  He left the hospital and had to do rehab before he was able to come home due to learning how to walk again and using a walker and wheel chair.  He also broke his hands so he had a special walker he had to use.  It was a VERY long few months.  I had to leave my job and take care of him 100%.  At this point, I was about half way through my pregnancy so I was pregnant, having to teach my husband how to walk again.  It took him 3 months to learn how to walk again and then finally get the okay to drive.  He got the all clear to drive approximately 3 weeks before I went into labor.  Luckily, he was able to drive me to the hospital when I went into labor.  We smiled and thought – after all we’ve gone through  the past few months its all behind us and we are ready for our baby boy to be in our hands.  Unfortunately, when Logan James was born it didn’t go as smoothly.  When they looked at me and said something was wrong I thought my world was over.  I didn’t think anything could go wrong – we already had my husband almost die when I was pregnant – this was the light at the end of the tunnel – there can’t be anything wrong. …. and then Logan was taken to the Children’s Hospital of Philadelphia with my husband at 10 hours old and I had to stay at our local hospital.  It was tough – but looking now – it was all worth it in the end.  He is a special little boy – and he’s ALL ours!  He has taught us more about life than anyone ever could!

Family Picture

Thank you Nicole, you and your family are such beautiful examples or love. Sharing your story will no doubt inspire so many others.

Sending you so much love.

Xoxo,

Eloise

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