Mckenna Rose was born on February 11, 2005 at 37 weeks. The pregnancy was complicated by polyhydramnious (too much amniotic fluid), and she was delivered via c/section. She did not look so great at birth and did not want to breathe. She had apgar scores of 2, 5 and finally a 9 at ten minutes. After 48 hours of desats (decreasing oxygenation) and apnea, she was transferred to The Children’s’ Hospital of the King’s Daughters NICU where she spent 5 weeks.  Mckenna was found to have primary aspiration; meaning whatever she took by mouth went straight to her lungs so she was NG tube fed for most of the NICU stay. She also was diagnosed with reflux, sleep apnea and pigmentary retinopathy. Mckenna failed her hearing screen also.  After normal blood chromosomes were done, the geneticist was stumped. Mckenna was discharged with an NG tube and apnea monitor and had just passed a swallow study for thickened feeds.  She was able to take the needed volumes of thickened feeds and the NG tube was taken out after one week at home! Yeah!


Finally, at 7 months of age, we agreed to a skin biopsy while Mckenna was under anesthesia for tubes for her ears. That is how we got her diagnosis of PKS.  We were so blessed to find an on line support group, since PKS is so rare. We needed to “talk” to others so we would understand more about our kids. It has been so helpful.


Mckenna is 5 years old now, she learned to sit up at about 18 months of age, perfected it by age 2, and started walking in a gait trainer at age 2 and independently walking at a little over age 3. She is now very daring, climbing up on furniture and attempting the steps. Her gross motor skills have really been coming along; we were able to remove the gait to the step down (2 steps) to our family room. Mckenna loves to eat! Pizza is her favorite, but she has recently found her sweet tooth and loves chocolate!  Mckenna wears bilateral hearing aids and glasses, she was non- verbal but has recently taken off in the verbal and sign language area. Signing opened the door to communication for her, and now she will try verbal and has about 10 words that are consistent and appropriate. She signs the word as she says it!  She knows her colors and counts to five, but says “one, one, and one” but picks another finger up each time. This has been a miracle for us. She gets such joy from watching everyone get excited that she just keeps trying! She is a clown also, loves to get a laugh and then keep doing the behavior that gets the laugh.  


Mckenna adores her 7-year-old sister, Emma. She follows her all around the house, says her name clearly, and dresses in her clothes, layers of her clothes! W caught her in Emma’s room wearing 3 pairs of Emma’s pants, with Emma’s undies over the pants and 3 pairs of her socks layered on Mckenna’s feet, while struggling to get Em’s basketball t-shirt on!  Mckenna has taught us so much about what is truly important in life. She makes each day so special and brings us such joy. We thank God for our sweet girl.