Beautiful and graceful, varied and enchanting, small but approachable, butterfl ies lead you to the sunny side of life. And everyone deserves a little sunshine.
to attempt to open her pulmonary valve and proved to be challenging.
Rylee was admitted again when
she was almost eight months old. During this admission she had open heart surgery. She basically had the plumbing of her heart reorganised and repaired, her pulmonary valve removed and a hole between the upper chambers of her heart closed. Rylee recovered well and after an eight day stay she was discharged home.
Today Rylee is 26 months old and
a bonnie 16kgs. She is reaching all of her milestones, is extremely active and rarely stops! She occasionally has a little cyanosis around her lips but really if she did not have a zipper, you would not think she had ever had cardiac surgery. Rylee is off all of her medication at the moment and we currently have six monthly check ups with her Cardiologist and three monthly check ups with her Pediatrician. There is no surgery anticipated in the near future, though when she is older she will need her pulmonary valve replaced. We had no idea how common Heart
Disease was in our babies until we were touched by the disease ourselves. Six babies are born each day with heart disease in Australia and heart disease takes more lives than all other childhood diseases combined.
We are thankful for the work and
support provided by HeartKids, and as a family, we try to support HeartKids and raise awareness of childhood heart disease whenever the opportunity arises.
Rylee’s Nana, My Mum Denise,
makes and sells magnetic Butterfl ies (or Rylee-fl ies) with all proceeds donated to HeartKids. She has sold almost 4000 so far with many of those being bought by our friends at the Illawarra Country Bootscooters. The Rylee-Flies which have become symbolic of Rylees journey and a reminder to all of the reality of childhood heart disease can now be found in many homes, schools and workplaces.
Tom Glover from the club adds
proudly: “Ceinwen has been dancing with us for 15 years. The club wanted
to do something and I am absolutely thrilled to say that our ‘ Heart Kids ‘ Social on Sunday 18th September raised a truly amazing total of $1,222. So it is a big thank you from me to all our superb dancers….”
Little Rylee need not fear for her
future. With parents and grandparents as she has and the support of her Mum’s club, the little girl can grow up knowing that Love is indeed the shape of a butterfl y. A Rylee fl y!
May the wings of the butterfl y kiss the sun And fi nd your shoulder to light on, To bring you luck, happiness and riches Today, tomorrow and beyond.
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