Interview with Laura. Let’s meet Katie! 

Today, we meet Laura and Katie. 

I believe I first talked to Laura many years ago when I was still digesting Emily’s diagnosis. 

I had the chance to finally meet Laura, Katie and other members of their family at the 5p- Society conference in NYC in July 2013. 

Let’s meet them. 

Katherine “Katie” Castillo

1.  Can you tell me about your family?  

Katie is the oldest of four kids.  She has a brother, Joey who is 25, another brother, Mikey who is 22, and a sister, Maggie, who is 20 (almost 21).  Katie loves her family very much and is very proud of them and their accomplishments.  She also has two dogs and a cat – Dewi the tortoise hair cat, Reese the half lab/half Besinji dog, and Rosie, the Australian Shepard dog.  Her brother Joey gets married in May, so we will be adding Sydney to the family soon.  Katie lives at home with mom and dad, with no future plans to go anywhere.  She also has a lot of extended family members, grandparents that she adores, aunts, uncles, cousins and baby cousins.  She wants to be called Tia K to her baby cousins.

2.  Tell me about your loved one with Cri du Chat Syndrome:

 Katie was born on her due date 11/11/1987.  She was 5lbs 10oz.  When she was birthed she had a very soft kitten-like cry that I exclaimed as being really cute.  Little did I know that there was a reason behind the cry and three hours after birth the doctor came in and told me what he suspected – Cri du Chat Syndrome.  Two weeks later we got the confirmed diagnoses.  Katie is considered a moderate-mild case of the syndrome.  Her breakpoint is 14.2ptr.  She can walk, talk, bathe herself, eat by herself, toilet herself and read.  She does have limitations though, she still has trouble with safety rules and I don’t trust her around the stove (maybe I just don’t have the patience to trust her!)

3.  Tell me about doctor appointments, therapies or school: 

Katie started in home occupational therapy at around four months and continued until she was 22 months old.  Then she went into a “preschool” a couple of days a week until she turned 3.  She went to special day class preschool with the local school district for the next couple of years.  When it was time for her to enter kindergarten, a decision was made to put her into a full-inclusion class.  Because of her November birth date and the unwillingness of the kindergarten teach to adhere to the full inclusion environment, Katie went into first grade instead.  She had a tough time, but she really worked hard during her elementary school years.  Thanks to her teachers and special ed teachers who worked to make it happen.   She continued in a full inclusion program, only being pulled out for speech therapy and adaptive PE until high school.  It was in high school that the gap between her peers and her learning that a change needed to be made and she was put into a special day class.  She thrived in this environment.  She graduated from high school with a certificate of completion and it was one of the happiest days of my life.  She graduated from Transition and she has been in an adult program called Path Point Discoveries since January of 2010.  My only wish for her here is that she would be employable and actually have a job.

4.  What else would you like the world to know?  

Katie is a very social young lady and loves people and animals.  She goes up to just about anyone and tries to talk with them, which is okay, but again those safety issues come into play.  She was a Girl Scout, went camping and sold cookies!!  Learned a lot about teamwork and being a good citizen.  She also likes boys and seems to always have a boyfriend, but doesn’t like to talk about them or acknowledge that she does.  The first time I realized this she was in high school walking out to meet me after school and her she comes walking with a group of kids and she was holding this boys hand.  My eyes much have gotten very big and the minute she saw me she dropped his hand.  I questioned her about it and she was closed mouth.  Recently she was given a bunch of jewelry.  I questioned where she got it, who gave it to her, and again closed mouth.  Come to find out it was given to her from a boy — she has a boyfriend — and we also found out that the jewelry belonged to the boys mother and Katie had to return it!!  

Katie loves to go to church on Sunday and can sing the songs, know all her prayers and says a prayer to Mary at every mass.  Another happy and proud day of my life was when she made her 1st Communion in 2nd grade.  People around us always comment on how pretty she is and how great she does in mass.

Katie does well at the dentist and sits like a pro while the dentist cleans her teeth or works on any cavities she might have.  She also wore braces for 5 years and loves her smile.  She sat really well for the orthodontist.

Katie loves to shop and loves to accompany me on Sunday when we go to the grocery store.  She likes to look good and can usually be found in dresses or skirts.  

She considers herself my assistant at the 5p- Society conferences.  One year she asked me if she could get a suit.  I asked her why she needed a suit and she said because I’m your assistant and I need a suit.  So we got a suit and she wore it at the conference.  When I introduced her she decided to model her suit for everyone.  It was quite hilarious and I actually got teary eyed!  She is pretty helpful at the conference and likes to meet and greet with everyone!!  

Katie loves to read and can read at a 5th grade level.  She loves Disney Princesses.  Her favorite character is Tinker Bell.  Her favorite food is a tie between a cheeseburger or shrimp.  She has a great sense of humor and loves Lucile Ball.

I remember the suit 🙂 Katie was so proud and she was and still is inspiring   

I didn’t cry

Well, this is it! We will be back home shortly.

10 days away, exploring New York City for the first half and participating in the 5p- society conference for the 2nd half.

By now, you all know that Emily has the cri du chat syndrome. Over the last 4 days we’ve met other families who have a child with the cri du chat syndrome.

Emily is 15, this was our first conference… For the first time ever our little family was just plain normal…

There was 94 families in attendance and 24 or 25 first timer like us…

One family came all the way from Iceland and their little girl was so amazing. This tiny 2 year old was walking around. What a joy it was to just look at her go!

Most families were from the US but we had a nice Canadian representation too.

We’ve met a little guy who is 15 months old and a 51 year old lady.

As per usual, Emily was first attracted to the little kids but slowly realized that the teenagers here were differents, in a good way. They either had Cri du Chat or had a sibling with cri du chat so to reach out to them was easy for Emily.

We had some struggles over the weekend and I will get to those in other posts…

Today, I want to tell you about the banquet/dance we had last night. I didn’t ask permission to post the kids pictures here so I can only show you my little girl but I can tell you about the first time in 15 years where I’ve danced with Emily until we were completely exhausted…


Emily got herself and Madison ready for the bal.

Earlier that day, Jon and I noticed balloons going in the banquet room… Emily is afraid of balloons… We’ve been working on her fear of balloons for years so before getting ready for dinner, we took her to the banquet room to look at the decor.


She didn’t like it but agreed to give it a try.

We brought her iPhone and headsets to help her cope with the noise level in the room.


It’s always good to be ready.

She ate her main course while we had our salad and than she was ready to leave. She wanted to get out of there before the music would start.

We kept talking to her, explaining we wanted to eat too, hoping to keep her there long enough for her to realize it could be fun.

Alex stopped by, than Celia, Rachel, Taylor and many more.

Slowly, Emily relaxed.

Something amazing happened…

Emily started enjoying herself, recognized a song and decided to get on the dance floor…

After each song, she asked if we could leave than recognized the next song…

We danced till 10pm. Only stopping for the silent auction and draws.

Emily bought some DVD in the silent auction!


We worked up a sweat.

I looked at Emily dancing with boys her age and older than her and watched her dance with many girls…. She joined in line dancing madness. It was beautiful!

I didn’t cry this past weekend during the conference but last night, while dancing with Emily and watching her having fun with other kids, I came really really close to cry…

I just couldn’t allow myself too as Emily might have thought I was sad or upset and my fairy tale evening would have been ruined!

Over the coming days, I will write about our trip, our success and struggles.

I will put pictures and tell you about the array of feelings/emotions that have hit me in the last 10 days. I will update you on our trip, the trip that started all this blogging madness. The trip that triggered Emily’s desire to talk about her syndrome which forced us out of our protective bubble…

Was it worth it? Was it worth busting our safe bubble?

What do you think?