Family Story:

We are the Coggiola Family!! Paul and I have been married for 22 years and we have eight children. Juliana is 16, Anika 14 (soon 15), Sofia 12, David 10, Callie 8, Josiah 8, Enoch 8 and Gabriel age 6.  We live in Northern California.

Anika is15 years old and was diagnosed with a De Novo NAA10 mutation at 9 1/2 years old.

ANDREA AND ANIKA

written: February 2020
location: USA

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Anika was born at 37 weeks 3 days with no complications. She weighed 7 pounds and was healthy even rolling over at two months old and holding her head up very strong until between 3-4 month. She was 9 pounds at her two month appointment and at her four month appointment she had lost weight and was 8lbs4oz. She lost weight and was not gaining for some unknown reason. I stopped breastfeeding her at 4 months and she went on formula because she was burning more calories than she was taking in. Once she was on formula she gained about five pounds in a little over a month.At around 4-5 months old she became like a limp noodle having lost all muscle tone. She started many types of therapies including, occupational, physical and water physical therapy by the time she was one. She was also in a playgroup therapy.

Her speech was very much delayed and she had tubes placed in her ears at 18 months old because of all the fluid built up from being immobile. Anika sat up unassisted around age two and crawled around 2 1/2 and walked around 3 wearing AFO's (braces on her ankles) and with the help of a small walker for a time.

She is toilet trained during the day and has been since about 4 years old, but needs assistance to wipe. She is not toilet trained at night.

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Anika also has prolonged qt syndrome (which is where her heart takes too long to come to rest). She was diagnosed with this around 18 months old, but has never shown any symptoms thankfully.

Anika went to a special education preschool from ages 3-6 and entered kindergarten at age 6 (which is typically started here around 5-51/2). She attended a special day class in the mornings and was in mainstream with an aide in the afternoons throughout much of elementary school.

 She was very social with not much awareness to anyone's personal space. She had difficulty trying to write and grasping a pencil was very difficult for her to do that and try to write as well.

She loves people and can talk, but definitely sounds as if she is hard of hearing. We all understand her at home and others are able to understand her but it is difficult. She is very persistent and will keep repeating herself to try to be understood. She didn't talk much until she was closer to 5 or so. And she only speaks in 2-3 word sentences outside of home and at home she will speak in longer sentences although they are not always complete sentences. We feel as though she can understand much of what we are saying, but has a harder time processing directions. She is smart and can manipulate. We call her our “working it girl”.

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Throughout middle school Anika has been in a program that offers academics, social skills, physical education and life skills, such as, shopping and cooking to name a couple. She is in the eighth grade and can read at a second grade level. She can read over 300 sight words. She dislikes math as it seems more of a struggle for her. Currently she is in a class that has an independent living skills program and they do outings to practice using money to use math that way. They do a dollar more program, where if she is buying something for example for $15.50 she knows to give $16 dollars.

It was very difficult waiting for a diagnosis and all the wondering. We were given multiple suggestions for what Anika may have had, but no one could diagnose her.

Our geneticist was wonderful and just reassured us that she would test Anika annually as science advanced in hopes of a diagnosis. We received our diagnosis when Anika was 9 ½ and although it was nice to know what she had it wasn’t very helpful until we started connecting with other families. I also started a facebook page in hopes of getting in contact with other parents and have grown very connected to our NAA10 family through it.

Some of the hard things with having a child with NAA10 really are the unknowns. How much will she be able to do? What will she need help with? What will her future be like? What will happen when we are gone?

It’s very difficult to think about the future and not wanting to put this responsibility on a sibling to care for Anika when we are no longer able to do so.

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Anika is a bit feisty and very determined which I feel have definitely benefited all the hard work she has had to put in and the progress made. She loves hats and any kind of electronic. She is usually sweet with her siblings, although she knows how to push their buttons and pester them. She can be also very sassy with mom and dad.

I’m so thankful for our NAA10 family!! It’s a gift to have others who get what we have gone through and are going through.

I am also very thankful other children are getting diagnosed at much younger ages so they can have the support they need. Although our girls all vary there are many similarities.

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