Celeste's Story
written by mom Theresa
My princess Celeste came into the world on
the morning of August 19th, 1999. She was a big girl at 8lbs 11oz. My
pregnancy was uneventful and normal, as was her birth. We started having
concerns about her development almost immediately.
Celeste never hit any of the typical baby milestones and she was a very
irritable baby, crying inconsolably almost constantly. When she was about 5
months old and still not making eye contact or holding up her head, I took
her to a developmental clinic to have her evaluated. I walked out of there
in shock... I had no idea that her delays were so global and so severe. We
started physical and occupational therapy for Celeste right away and got
about a million specialist appointments to try to figure out what was going
on. About 2 months later came the even more devastating news; Celeste had
Canavan’s Disease, a rare degenerative neurological disease caused by a
deficiency of the enzyme aspartoacylase (ASPA), which leads to the buildup
of N-acetylaspartic acid (NAA) in the brain. The accumulated NAA causes a
chemical imbalance that destroys the myelin, causing the white matter of the
brain to deteriorate. Practically what this meant was that Celeste would
never walk or talk, let alone sit up independently or hold up her own head.
She would have health problems her whole life and as she got older she would
loose the few skills she struggled to gain. She would be completely
dependent on us to care for her every need, essentially a prisoner to her
body. The worst part of all of this was that her life expectancy was
significantly shortened, we would be lucky to make it to her 10th birthday.
The first few months after the diagnosis were really hard. Celeste started
having difficulty eating around her 1st birthday and had a feeding tube
placed when she was 18 months old. She started having seizures around this
time as well. She had frequent hospital stays until we got her seizures
under control. Once the seizures were being managed, we began trying to find
a way to help her with her muscle tone. She was very spastic, or stiff, and
it was making her uncomfortable pretty much all the time. Finally through a
combo of medication and botox injections we were able to manage her muscle
tone and Celeste was much more comfortable. She finally stopped crying! Her
personality emerged and we saw what a true joy she was. Thankfully life went
back to normal for a while after that. Then around the time she was three,
she started having respiratory problems. She would start to wheeze and
breathe very heavily, to the point where she was heaving so badly she would
become exhausted and she could barely breathe. We were able to get Celeste a
nebulizer and medication for home use to help prevent her from getting to
that point.
One and a half years ago, when Celeste was 6, our family was blessed with
the adoption of our second daughter, Amira, and Celeste got to be a big
sister! Amira just adores Celeste. She will climb up on Celeste’s lap in her
wheelchair and give her a kiss or sit next to her when Celeste is on the
floor. She brings her toys and puts them on her lap and gives Celeste kisses
and cuddles whenever she can. It has been wonderful for both girls to have
each other.
Despite her many limitations, Celeste lives life to its fullest. She has a
wonderful sense of humor and has a smile like sunshine. She loves the simple
things like sitting outside on a summer day and feeling the breeze in her
hair. She loves to go for walks, listen to the birds outside, swing at the
park. She loves music and stories. Her favorite show is American Idol! She
understands everything around her and can answer yes and no questions with
eye blinks. She listens to books on tape and loves fantasy stories about
magic, princesses and unicorns just like any other girl her age. She and
loves silly noises like sneezing, shaking or barking, or her little sister
giggling. I always know when Amira is into something because I can hear
Celeste laughing! Celeste brings so much happiness to all of our lives. She
is such an incredible girl, so expressive and so happy all the time.
Throughout the years, Celeste has had many of the same health concerns she
had in her early years, they have just amplified. We still struggle with
increasingly difficult to control seizures and respiratory distress. She can
no longer tolerate the medications used to stop her wheezing without having
a major seizure, so every time she has any breathing issues we end up in the
ICU for a couple days. During cold and flu season we walk on eggshells
around here! She is on a lot of seizure medication, so she has been having
more sleepy days lately. This is how the disease progression has manifested
so far in Celeste.
We continue to try and live each day to its fullest, and appreciate all the
time we have with Celeste. She has taught us so much! I feel so lucky to be
her mother; she is truly my ray of sunshine.
Abilities:
See: Celeste is visually impaired, but she can see. Bright things are
easiest for her!
Hear: Yes.
Talk: No, but she giggles! She communicates Yes and No with eye
blinks.
Walk: No.
Read: No, she listens to books on tape and we read to her a lot.
Use hands: No, she has very limited movement in her arms. She does
like her hold her favorite doll on her lap though!
Siblings:
sister Amira, age 2
Child's Interests:
Celeste loves to be read to and to listen to books on tape. She likes to
spend time outside and go for walks. She likes to watch and listen to birds
and ducks/geese and she likes to go to the zoo. She likes music and soft
dolls or stuffed animals that can sit on her lap in her wheelchair. She
likes yoga, and has a yoga for the special child class every Monday! Celeste
loves to go to the movies. Her favorites are Disney type cartoons and action
movies (like Spiderman!)
Sibling's Interests:
Amira loves animals. Her favorites are dogs and cats, birds, and fish. She
also loves to play outside and in the water. She likes puzzles and books as
well.
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