Interview with Nessa – Let’s meet Alexia!

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. 

Interview with Allie

When Emily was diagnosed, we were alone…. Surrounded by people but extremely alone.

Nobody around us (including doctors and therapists) had ever heard of cri du chat syndrome.

Facebook wasn’t around and the support from support group wasn’t what I needed…

Over the years, I have met many families virtually and even had the chance to meet some in person in New York in 2013.

From now on, I am going to do my best to introduce you to our extended family.

Today, let’s meet Rick, Kathy and Allie.

1. Can you tell me about your family?

Answer: As retired teachers (me 30 years teaching elementary and middle school music, my wife 31 years teaching 6th and 4th grades) we had many expectations for our retirement. That all changed when Kathy and I were asked to be honorary grandparents to Allie, (now age 11) with Cri du Chat and her siblings, Nate age 9 and Laney almost 2. We never had our own children but Nick (who was my private voice student when he was in high school) and Angie have shared theirs with us. And what a blessing they have been.

2. Tell me about your loved one with cri du chat syndrome.

Answer: Allie was diagnosed when she was a little over a month old. The geneticist said she would probably never walk or talk and might not live past the age of 5. She has proven all of that wrong. She is an amazing little girl who is reading, doing math, very definitely talking and it’s getting clearer almost every day. She is a very happy child who loves deeply and enthusiastically. She gives marvelous hugs and loves to spend time with us. She loves to play with her brother and will ask him to pretend with her and be her favorite Disney princess (of the day). At birth there were many problems with her eating and they put in a g-tube. She was fed that way for about 3 years. Today, she eats totally by mouth and much prefers vegetables and fruits to meat. She loves the old Lawrence Welk shows, loves Disney, enjoys playing on her iPad and loves her rings and bracelets. She is a very feminine little lady and wears only dresses, never shorts or jeans. She loves to tease and giggles easily. she is truly a joy

3. Tell me about doctor appointment, therapies or school.

Answer: She has gone to a variety of doctors over the years. Her parents had her to a GI specialist because of her stomach and bowel issues but today that no longer seems necessary. She had physical therapy, occupational therapy and speech therapy from a very young age. Her early intervention physical therapist also did hippo therapy (horse therapy) and she did that for a couple of summers. She is in a special needs classroom at school but is mainstreamed for several classes including music, physical education and art. She started nursery school when she was only 3 for one year and then had three years of preschool. Then entered a regular school for kindergarten. Today she is in 4th grade and doing very well.

4. Tell me a success story.

Answer: Two areas of success stand out for me. She is, today, reading at a first or even second grade level and her speech continues to improve. She is quite willing to tell us what she does and doesn’t like or want. I am impressed that she really wants to be treated like every other child. Yes there are special needs but her growth and maturity are wonderful.

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

Answer: I would like the world to know that every child, special needs or typical, just wants to be given the chance to learn, to grow, to shine to the best of their abilities. That will vary for every child but can we just accept each child as the wonderful and unique being that they are, here to bless those of us who are fortunate enough to be in their lives. Please expect only the very best from any child you have but accept and treasure their best, whatever it may be.

The picture is of Allie’s first day of school this year.

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Thank you Rick for jumping in and being my first featured guest.