"Cara’s diagnosis has given us a new perspective on life. We now see more clearly than ever how precious life is and how so much of life’s stresses are not the major catastrophes they appear to be. Family, friends, sharing, caring, laughing, celebrating, dancing (ok, skiing too Scott) ˆ all important! Enjoy and appreciate every day, no matter what you are doing, no matter how mundane or challenging. ~Brigitte Sarte-Dance

Caroline "Cara" Juliet Dance was born at 5:30 pm on Friday, September 9th 2005, four weeks early, to her proud parents, Brigitte and Scott, and her older sister Stephanie. She was born at the Queensway-Carleton Hospital Birthing Unit in Ottawa, Ontario, Canada. She weighed 5 pounds 4 ounces. She had a seventeen-day stay in the hospital after battling with a pneumothorax (collapsed lung), jaundice and weight gain issues. She also had a heart murmur, typical of premature babies. She was "tongue tied" and has a sub-mucous cleft palate, which was recently discovered.

Caroline was diagnosed with Translocation Trisomy 13 at 8 months old. A month earlier, she had a week long stay at the Children's Hospital of Eastern Ontario (CHEO-an AMAZING hospital and staff!) when she began having seizures. We left the hospital with a diagnosis of Epilepsy and farsightedness. Her MRI was normal and only chromosomal blood analysis was outstanding. About six weeks later, we were called back to the Genetics department of CHEO and received the news in a very professional, gentle and empathetic manner. The doctor showed us a photo of Cara’s chromosomes. She has 80% of an extra chromosome 13 which is attached to chromosome 22. Difficult news, but finally a clear diagnosis. He gave us no life expectancy limit and told us to keep doing all of the things we were already doing for her.

Now, at 10 months old, Caroline is a very happy baby who coos and belly laughs at the drop of a hat. She does not, nor has had, any major health concerns since birth. She has about 25 myoclonic seizures per day, which are harmless and occur in clusters of 2 or 3 little jerks that last about a second or two per set. She has developmental delays, although she is learning and getting stronger daily. Cara is rolling over, can lie on her tummy and lift herself to 90 degrees. She has good head control and can sit/stand in her exersaucer and play with its toys. She can sit in tripod position for a few seconds on her own. She can pick up objects and loves to put things, toys, spoon and cookies etc., in her mouth.

Caroline is still being breastfed and has been eating solid pureed foods since 5 months old. She is long and thin, like her sister, but is keeping to her own 1st percentile on the growth chart. Cara is on Nitrazepam, an anti-convulsion medication which we are still playing with to minimize the amount of seizures, and Prevacid (lifesaver!) for her acid reflux. (She was diagnosed with acid reflux at about 3 months of age after having spent a couple of months crying 4-5 hours per day with what we thought was colic. Poor thing!) She wears glasses, which help her see very well.

Caroline is being followed by a team of very caring professionals including: her pediatrician, a developmental pediatrician, a neurologist, a geneticist, an occupational therapist, an ophthalmologist, an audiologist and cardiologist. She will see the ENT (ear/nose/throat) doctor about the sub-mucous cleft palate. We attend a Special Needs playgroup that is organized through the Ottawa Children's Treatment Centre (which is wonderful!)

We, Scott, Stephanie, Caroline and I, are so fortunate in our family and friends (you know who you are!) who are overwhelmingly generous with their time, help and support. There is always risk involved when one has children and no future is certain or predictable. We are just going to make the best of every obstacle to come our way and are going to keep appreciating both our daughters for the lovely miracles they are. Cara’s diagnosis has given us a new perspective on life. We now see more clearly than ever how precious life is and how so much of life’s stresses are not the major catastrophes they appear to be. Family, friends, sharing, caring, laughing, celebrating, dancing (ok, skiing too Scott) ˆ all important! Enjoy and appreciate every day, no matter what you are doing, no matter how mundane or challenging.

Sincerely,
Brigitte Sarte-Dance for the Dance Clan
(Scott, Stephanie, Caroline Dance and Brigitte too!)

"Live like there is no tomorrow,
Dance like no one is watching,
And laugh like you’ve never known sorrow."
Chinese proverb