After packing, unpacking, sending over many, many papers for the selling and buying of a house and getting a loan, getting cable and today internet, I am SO thrilled to say that we have a new home, a new nest for our family! YAY for space, yay for an attached garage, yay for a 1 level ranch, yay for lots of lighting and windows, yay for a great neighborhood and yay for us finding, what seems like, the perfect place to raise our two little girls! Even the dogs seem more at ease in our new place and after about a week of getting settled, it feels so RIGHT!
The last few weeks were not easy but it was all worth it to be here. Thanks brother and realtor Andy for all your hard work and help.
We left a wonderful neighborhood and home after 14 years and we left on a beautiful note. I wanted to share the upcoming Third Annual St. Lucia White Party for PKS Kids, so I wrote to the neighborhood paper hoping they may post the event in the 'event part' of the paper. After reaching out, the editor wanted to come over and talk to us a bit about our journey. Little Lucia, our beautiful Lubird, had the sweetest article written about her and the upcoming party in this September's issue. Here is it.
http://issuu.com/greaterparkhillnews/docs/gphc_september_2013_v8
Born with Pallister-Killian syndrome, Lucia Dawkins is the light of her family’s life and the inspiration for a great benefit
By Erin Vanderberg, Editor
Juliet, Jason, Lucia and Scout Dawkins live with their dogs Blue and Frieda at 26th and Holly. They also live with Pallister-Killian Syndrome, a rare chromosomal disorder that has afflicted their oldest child – who they affectionately call their Little Lu – since she was born in April of 2011. Living with a rare syndrome, unknown even to most doctors, has been isolating at times, but through an organization called PKS Kids, the Dawkins family has not only found answers to the questions they have, but a whole support network of families around the world. Juliet now serves on the PKS Kids board and this year, her third annual St. Lucia White Party for PKS Kids, taking place September 20 at the RedLine art gallery, will be the organization’s largest fundraiser.
Diagnosing the Syndrome
Juliet experienced a normal pregnancy with Lu. When Lu was born, Jason noticed her three webbed fingers. Neither parent worried much about her hand, and proceeded to shower their newborn with the love and enchantment of first-time parents. Then she was diagnosed with jaundice, had trouble breathing and eating and was admitted to the NICU. By the next day, the doctors had pinpointed a list of markers that concerned them. They wanted to run a series of tests to see if she had Down or Turner Syndrome, or another life-altering condition. Juliet and Jason were terrified of a potentially devastating diagnosis but were hopeful that everything would be fine with their new baby girl.
When Lu was two-weeks-old, the Dawkins were informed that their daughter had Pallister-Killian Syndrome. They explained how rare the syndrome was, how it was caused by an extra short arm of the 12th chromosome, and that it’s not hereditary, but random. They learned that, because it is a mosaic syndrome which does not affect every cell, cases of PKS run the spectrum from severe to so mild that it may not be diagnosed, and there are under 300 diagnosed cases in the world. An inability to walk or talk, a shortened lifespan, seizures, poor hearing and vision, organ malfunction, and dependence on a caregiver were all challenges that Lu would likely face. They felt as though their world was crumbling.
As they were leaving the geneticist’s office, holding their little Lu with tears streaming down their face, Juliet and Jason will never forget the doctor making a very astute analysis in a very scientific voice: “She’s just a little human being that needs to be loved.”
Lucia’s First Year
Lucia came home to Park Hill with a G-tube, oxygen and an oxygen monitor. At about a month old, she was having trouble breathing and had to be rushed to the ER – the hypotonia that affects her muscle tone had caused her difficulty in swallowing, and she had been aspirating her food. She went back to the hospital regularly for sleep studies which aimed to pinpoint her difficulty breathing at night.
Meanwhile, both Juliet and Jason researched PKS nonstop, from their laptops at night and their phones during the day, making sure they were covering everything, not missing anything and doing enough. The doctors had sent them home with a pile of paperwork and brochures to read, and on one of the brochures was the name of the organization PKS Kids, the only nonprofit organization supporting PKS families and research.
Their Support Network
When the family got involved in PKS Kids, things changed.
“That was the site that brought happiness to the situation… it was uplifting and shared great stories about the kids and why they brought so much love to their families’ lives,” said Juliet.
They decided to attend the PKS Medical and Family Conference in Washington, DC, when Lu was a year old. Although very excited, Juliet was also anxious about seeing the future severity of Lu’s syndrome in the children she would meet.
“I saw parents and siblings who couldn’t be more proud of their kids, and that was all that I needed,” said Juliet.
“It was one of those experiences where you sit in the lobby and immediately you had a huge group of friends. I could have stayed there for a week, literally without ever leaving the lobby. By the end of the weekend, we felt like we had a new giant family that understood things the way other people may not,” said Jason.
A Chance Meeting
While the syndrome is very rare, there are five known cases in Colorado – one family living just a mile away from Lu. Juliet saw Chris and his mother Caroline for the first time after leaving a yoga class in Stapleton. She passed by Caroline pushing Chris in a wheelchair and had a sense that the boy’s syndrome was similar to Lu’s. She couldn’t sit through lunch, and had to go back outside and find them. When she asked about Chris’ syndrome, Caroline explained that it was a rare syndrome and left it at that. Juliet could tell that Caroline received this question often, but she kept pushing. When Caroline said the words “Pallister-Killian Syndrome,” and Juliet responded “Lu, too” the women burst into tears and hugged each other for a long time. Today, the women talk almost every day. At the time of publication, Chris was in the hospital with a severe case of pneumonia.
Life Goes On
Last fall, Juliet earned her Certified Nursing Assistant qualification through the state, which has certified her to take care of Lu without nursing assistance. Lu was accepted into the Anchor Center for the Blind, and now attends their day program twice a week in addition to her physical, speech and occupation therapies. This fall, the family will move 20 blocks south to Hilltop to live in a one-level ranch that Lucia can get around in. In June, a new family member joined the Dawkins unit – her name is Scout.
“We considered not having any more kids,” said Juliet. “Not because we were scared or didn’t think we could handle it – we felt like a great team. Lu’s going to be with us forever – she’s not going to move out. The biggest decision was… I didn’t want her to think that she wasn’t enough.”
Names in the Dawkins family carry powerful meanings: Lucia means light, and her parents think it is the perfect name for their easygoing angel of a daughter. Similarly, Scout was named for the guidance and friendship she’ll provide for her big sister.
St. Lucia White Party – September 20
The benefit for Lucia and PKS Kids, now in its third year, was Juliet’s sister-in-law’s idea, as something she could do to support her family. The event felt like a celebration of life to the Dawkins, and they decided to become the hosts and make it an annual tradition. As it was from the beginning, their sister-in-law Kim Hicks, neighborhood friends Laura Huff and Elyse Slayton, and friend Megan Gilbert remain the co-hosts of the benefit.
This year’s St. Lucia White Party, taking place Friday, September 20 from 7 to 11 p.m. at the RedLine art gallery, will be an island-themed affair, a nod to the Dawkins’ honeymoon spot and the inspiration for Lucia’s name. The event will feature Three Tomatoes Catering, an open bar, a silent auction and entertainment from a steel drum band and a DJ. If you go, don’t forget to wear white.
Both Juliet and Jason’s employers, Pura Vida Fitness Club and Confluence Energy, are sponsors of the event. Many Park Hill businesses have made donations to the silent auction, including: Bang Salon, Cake Crumbs, Ciji’s, CrossFit Park Hill, Grape Expectations, Oblio’s Pizzeria, Park Hill Cleaners, Park Hill Veterinary Medical Center, Pary’s, Sacred I, Spinelli’s Market and Tables.
“Lucia has brought out the best in everyone,” said Juliet. “It makes you a better person when you’ve got someone special to care after.”
To buy tickets for the event, visit stluciawhiteparty.com. To read Juliet’s blog on Lucia, visit littleladylucia.blogspot.com. For more information on PKS Kids, visit pkskids.com.
Thank you Erin for sharing our story and creating awareness about PKS and the upcoming St. Lucia White Party!
And to my friend Amy, I have been thinking about your family so much in the sudden loss of your amazing, fun, and sweet dad. Our family vet, wonderful father and more. So many childhood memories came back hearing about Bob- what a great person. Love you Amy!
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