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!
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.
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.