Natalia Marie

Natalia’s Story

“We are blessed by this amazing child.”

Natalia Marie, Trisomy 13, Huntington Beach, CA, 8/25/2000

Natalia2015 TAM Photo

Update January 2015:  Natalia is doing well.  She’s been seizure-free now for 8 months.  She had surgery to remove a cyst last fall (2014) and recovered well. Currently we are trying to avoid any sort of back surgery so Natalia now wears a TLSO brace for her scoliosis & kyphosis and is tolerating it very well.  We’ve chosen to keep Natalia home now from school and enrolled in the district’s 9th grade home teaching program.  Its been a wonderful transition and I really enjoy having her home.  We get out most days on the tandem or with her large rifton walker. When on short errands Natalia can walk short distances so we’re keeping this gal moving. Natalia sees a physical therapist weekly which I believe has really helped with her physical mobility. Natalia recently reached a wonderful milestone, she walked around the block. It took about 30 minutes with a few standing breaks, the great news is she didn’t need to sit down. Daily trisomy life is full adjustments, we’ve learned to adapt each step of the way.  Natalia’s sweet demeanor and perseverance, along with her sweet spirit of JOY, shows us her LIFE is worth living.
I was very happy to see the March for Life 2015 theme is “Every Life is a Gift.”
They are addressing the challenging prenatal journey when families are given a poor prenatal diagnosis, highlighting the trisomy experience and difficult pressures put upon women to abort these unique babies.
EWTN TV  will be following the events http://www.ewtn.com for two days (you can view off the website or check your local listing for the EWTN schedule).

March for Life 2015 DC http://marchforlife.org/
Walk for Life 2015 West Coast http://www.walkforlifewc.com/

You can read more about Natalia’s Trisomy 13 Life Journey at http://trisomyfavoritethings.blogspot.com/

And have a look at this:  http://embracelifeonemomentatatime.blogspot.com/

Natalia Marie1Natalia Marie3Natalia Marie4Natalia Marie5

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Update July 2014:  Natalia is doing well, approaching her 14th Birthday. She’s been seizure free for over two months now with an adjustment in her seizure meds. She enjoys her family, music, bike rides, and pool time. Below is an update on Natalia’s Developmental progress. Currently her weight is 83 lbs and height is 4’11”

Taken from the TRIS Tracking Rare Incidence Syndromes project
College of Education and Human Services
Case Studies (February 2014)
http://web.coehs.siu.edu/Grants/TRIS/pdfs/CaseStudy2-2014-02-24.pdf
Developmental milestones
Child has attained most developmental milestones to the age of 9 months with some skills 
extending to the 12-18 month range.
Currently, child using a Big MAC button, pull switch, and 4-way switch for 
communication at home and school. She also uses facial expressions and a few signs/gestures to communicate her wants and needs. Child demonstrates affection to preferred adults and her 
siblings. She engages with others using eye contact, smiling and giggling aloud. She also
vocalizes and is able to hum a few recognizable tunes at appropriate times, such as the “I love 
you” song from Barney.
Cognitively, child can problem solve. For example, if an object is in her path, she will 
walk around it. She also demonstrates choice making to go to and from different areas of her 
home, such as the bathroom to play with water in the sink, clothing and videos. She is able to 
respond to one step requests such as stand up. Child also demonstrates an understanding of the 
concept of “one more time”. For activities of daily living, child cooperates with dressing by 
lifting her arms and legs. Child is still in diapers but uses the toilet facilities at both school and 
home with assistance to remove diaper. She cooperates with necessary health care routines such 
as tooth brushing.
Additional developmental skills include: displays reaction to familiar person nearby, 
looks at face of person speaking to her, visually focuses on objects and screens, touches objects 
when placed nearby, turns towards sounds and responds to hearing name with head turn toward 
sound. In the fine motor area, child can grasp and release toys items, activate cause and effect 
toys and transfer hand-held objects. She also reaches for and leads adult to a desired object. In 
general, child expresses needs and wants by using vocalizations, gestures, and singing. She 
maintains attention for the duration of exchanges with familiar adults. She recognizes her image 
in the mirror. Child anticipates tickles and demonstrates excitement when going to or from 
school. She is also able to adjust to changes in schedule and environment without difficulty.
Mother notes child’s positive demeanor. Child laughs and smiles in response to daily activities 
and interactions with family members and familiar adults.

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Natalia is officially our trisomy thirteen teen. Living 13 years with full trisomy 13!  She surprised us at birth with her genetic profile and stayed in NICU for 11 days, only needing oxygen for the first two. We took her home with the Haberman bottle feeding system for cleft lip and palate.

Natalia Marie6At six weeks she needed a complete malrotation repair, and g-tube insertion. Natalia has had several surgeries to keep her comfortable within the medical issues that come with full trisomy 13. She has come through all of them beautifully. She had an ASD and VSD both closed by her 3rd birthday. She walked with help by 3yrs.. and we kept up walking with help as much as possible first, before picking her up or putting her in the wheelchair.

Natalia Marie2Natalia crawled by 5 years, and walked hand in hand by age 7 and walked on her own, at age 9. She continues to walk in the home independently, and with someone outside the home. Natalia has a very sweet demeanor and brings more JOY to our days than we could have ever dreamed. We are blessed by this amazing child.

Natalia MarieNatalia Marie Growth ChartNatalia Marie age 13

 

 

 

Therese, Natalia’s mom: thereseann@socal.rr.com