Interview | Lessons from my daughter

You might not know this but my weekly interviews are allowing me to meet great families. We all have cri du chat syndrome in common… We have it or love someone who has it.

We read and comment on Facebook post but we don’t all know each other. We live all over the world, we can’t meet for coffee but we meet on-line.

Today, we chat we Nessa!

Hello Tessa!

Can you tell me about your family?

We are a family of four. Alexia is my first born, she was born with CDC. Alexia was hospitalized after she was born because she had a hard time sucking, breathing and swallowing. Lexi was diagnosed at 2 weeks old. Both me and dad had her at a young age so it was alot for us to take in but we handled it all well. We also have our second child who is 5 and has no disabilities. Alexia soon to be 18 will be graduating this June. I am a very proud mom.

Tell me more about Alexia

Alexia is a none verbal teenager and is wheelchair bound. Alexia does walk with a walker and adult support but she tires out fast. Last year we started useing a trike with her to exercise for legs. She loves her bike. Alexia when she was younger up to 2008 has been prone to pneumonia. In 08 she had spinal surgery and had rods put in her back.

Can you tell me about doctor appointments, therapies and school?

Her primary doctor has been wonderful. Alexia doesnt get outside therapy it’s been a problem getting her outside services. School on other hand cant wait for her to be finished they dont understand her needs or her disabilities. They treat all the kids the same.

Tell me a success story 🙂

If we hadn’t done the spinal surgery who knows how Alexia health will be. Im thankful to Shriners hospital Mr Masso who push the surgery on me. Alexia is a healthy girl and she is doing great. Yes she still has some breathing issues but nothing like she had before. So I’m thankful.

Anything else you want the world to know.

I would like the world to know that no matter these children disability they are very bright. They are just like all other persons in this world who wanna be loved. Cri du chat is just a name not the person. Cdc child are very special just as all others are. We are proud parents. And i also feel we have to raise awareness everyday so people can recognize that yes there are other syndromes. We, as 5p- family members, have to do just that.

I saw from your Facebook that you have a gofundme campaign going on. Would you like to tell me about it?

Sure. We are trying to raise money to get a modified van for Alexia. Right now I have a tiny car and she is getting big. Alexia is long and she likes to lean alot so we got her a hardness seatbelt. But I still have to pick her up and carry her in and out of the car. I also take apart her wheelchair everytime. Its worse when it rains. I looked into getting a handicap ready van but we cant afford it. Its really 5,000 but im not greedy. I have already passed it over twice cuz we have not raised enough.

A van for Alexia

Than you Nessa.

I had to get in and out of our car until she was 4 and started walking on her own. My back will never be the same… I can’t imagine my back would have survived doing this for almost 18 years!

I hope you will find a way to get your modified van.

UPDATE April 18 2015: Peyton is getting her bike!!!

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Do you remember how it all started?

I mean my blog… 🙂

Emily was excited about going to New York to the Cri du chat syndrome conference and decided to tell the world about her syndrome. She made a presentation at school and I started writing this blog.

My way of sharing how Emily has been inspiring us daily.

When we finally made it to the conference, we met incredible families.

One on them is Peyton’s family.

That little girls stole all of our hearts from the moment we met her. Peyton’s smile and ability to walk and dance was so amazing to us. I couldn’t stop looking at her. Haley was attentive and caring for her younger sister and Jeff and Kelly appeared to be looking at Emily as much as we looked at Peyton. Such an inspiring little girl.

They are truly a beautiful family and today, I want you to meet them and share this post as much as possible so in the near future, Peyton can ride her own bike.

1. Tell me about your family!

My husband Jeff and I have been married for almost 13 years, and we have two beautiful daughters. Haley is eleven and Peyton is five.

Of course we don’t lead the typical life. I feel like our lives are constantly in fast forward, but that’s our “NORMAL”, so that’s ok.

Jeff is a truck driver and I’m a nurse, so between work and family life we have very little spare time!

Haley is in sixth grade and is a wonderful big sister. Peyton adores her!!! I love to see the bond that they share, and I pray that the bond grows as they get older!

2. How is Peyton doing?

Peyton is doing absolutely AMAZING!

We have been through many struggles since the time she was diagnosed back in 2011.

Like many CDC parents, we were told that Peyton would never walk or talk. We wanted to be sure to get her every single service and therapy she needed.

For two years, I fought nonstop with our local school district for an out of district placement because the program they had was not appropriate for Peyton. We hired an advocate and an attorney, and I basically learned every single law myself.

We won, and Peyton was placed in the greatest educational placement. We were left to battle the district year after year.

The district was only offering to pay for a one year placement. We chose to make a really hard decision and sell our home and move into the district where Peyton’s school was located. This way, she was guaranteed all she needed. Needless to say, Peyton has grown leaps and bounds. She started school, only being able to verbalize 10 words. Now, she is up to over 200!

She is in an integrated classroom with typically developing role models. It is just what she needed to learn and grow. She plays and interacts with the other children, can count 1-10, can sing her ABC’s, knows all her colors, and the days of the week.

Oh, and most recently, she can recite the letters to spell her name! The other day, she began SINGING a song that was on the radio! I cried! We are so blessed!

3. I’ve seen your Go Fund me page to get Peyton an adapted bike. I’ve look at those way back for Emily, they are quite expensive. How are your fundraising efforts coming along?

Yes, the bike is just about $4000 with all the modifications that Peyton needs.

The Go Fund Me Page for Peyton’s adaptive bike was created two weeks ago. We have raised $2,400 and have also received a few private donations as well.

Two great friends of mine are also hosting their own fundraisers for Peyton so we can reach our goal to order her the bike. We are so grateful for all those who have supported our special little girl.

Note from Pascale: this is the page, every penny counts, if you can help Peyton get her bike, please do so. If you can’t afford to help, please share this blog or share her go fund me page on your Facebook! Pedals for Peyton

4. I see pictures of Peyton and videos of her and I think she’s just an amazing girl. Can you tell us about her therapies?

Thank you so much! Peyton has been receiving outside therapies for 2 1/2 years and has PT, OT, Speech for an hour once a week.

In school, she receives PT twice a week, Speech three times a week, and OT three times a week. School also works on feeding therapy as well. She also goes to aquatic therapy with her entire class, and that is by far her FAVORITE!!!!!

We also play music all the time for Peyton, and that calms her immensely. She still loves to dance and SING! She really loves putting on a performance for others!

5. Is there anything else you would like to tell me?

I wanted to thank you for taking the time to get to know Peyton and our family. I am so thankful that social media has connected us with so many families.

The conference back in 2013 was amazing. We felt like our lives were NORMAL for once. No judgment, just lots of encouragment, tears, and laughter.

I remember seeing your family and thinking ” Wow! I hope Peyton is just as successful as Emily. That child is so inspiring.”

Now I’m tearing up…. I should have read this part before starting to put it all together. Thank you Kelly for your kind words.

I believe that all of us as parents need to push our children to the limit, no matter how grim those medical professionals portray our children’s diagnosis to be. Aggressive therapies are key along with multimodal communication.

Peyton continues to use sign language, picture symbols, her Ipad and spoken word to communicate. And I believe that her verbal skills have improved significantly.

When all of us received the news that our children had CDC, we felt the same feelings of hurt and sadness.

My worse fear was fear of the unknown. As the years have passed, I try not to dwell on those things. My priority is to push Peyton to the limit, to be sure she receives all she needs to be successful, and most importantly to be HER VOICE until the end of time.