Glenys and Tegan Saffigna

Hi and welcome to the Saffigna Twins, Glenys and Tegan’s Webpage. With no shortage of challenges, courage, drama, funny stories and downright determination the girls have been through what you would call a whirlwind of a journey. Their story is nothing short of Miraculous! They survived against all the odds to become the beautiful, engaged and for the most part happy young ladies they are today.

Born at week 26 of the pregnancy they experienced complication after complication. Given very little chance of survival at birth, they fought hard to continue to live. Their little tiny, lives on a knife's edge on too many occasions to count. The twins developed Twin-to-Twin Transfusion (TTT) in-utero, where one twin received more nutrients than the other. Due to limited technology at the time, the girls were given little to no chance at surviving birth.

Prematurity of Birth along with the Twin-to-Twin Transfusion and low birth weight (they each weighed approximately: 500gms at birth) lead to the twins being born with multiple complications. A long hospitalisation followed with daily challenges and hurdles before Glenys & Tegan were able to come home to their loving family.

As their mother always said, “they have a smorgasbord of disabilities and medical issues” that do not fit under one umbrella.

Both girls have Cerebral Palsy, Severe Intellectual Impairment, Global Developmental Delay, Incontinence, mobility issues and are non-verbal. Sadly, due to TTT, after birth Glenys developed clots in some of her tiny vessels which caused Ischemia (lack of Oxygen) which led to the death of tissue. Glenys lost one Kidney and both of her feet. At one time the specialist felt she may lose more of her legs. Consequently, Glenys wears prosthetic feet and can walk supported.

Both the girls had issues with their sight and required laser surgery to preserve their vision in those early weeks. Luckily Glenys has retained her vision, but Tegan lost the sight in her right eye and only has approximately 15% vision in her left eye. She is legally blind. The list of issues goes on……………… far too many to explain.

The determination of the girls, the loving care of their parents Judith & Tony, the watchful protective eye of their big brother Dylan, the support of their extended family and friends in conjunction with the expert care and guidance of so many of their amazing medical team of doctors, nurses, and allied health professionals the girls continued to thrive facing the challenges head on. Their love of life is so clear in every smile, giggle, laugh and look.

The girls attended school at Monash SDS, where they learned how to grow into the unique, beautiful young adults they have become today. Tegan is the quieter cuddlier more innocent of the two, however don't get in her way because she'll let you know about it. Glenys is cheekier - always trying to bite off more than she can chew, as well as pick fights with her sister (some things never change) and her older brother Dylan.

It didn't take very long for the girls to develop their own personality, as well as different likes, dislikes and interests. Their mutual love of celebrating birthdays with the birthday cake and the “Happy Birthday” song is a joy to watch and well known amongst those who know them well. Glenys enjoys eating the cake too!!!

The Saffigna household soon become iconic and you knew what you would be walking into as you approached the steep driveway. On approach to the front door with the sign 'Pooh House' would catch your eye. Let me tell you this name wasn’t just because Judith, the girl’s mother was an avid Winnie the Pooh fan! The girls made sure it had a literal meaning as well. With the ever so catchy sounds of Hi 5 ringing through the house, it was a constant hive of activity with many frequent visitors and interactions. These days Glenys & Tegan have added more refined musical taste including Cliff Richard, John Denver, the Wiggles and Fleetwood Mac. Thank goodness, finally some variety!

Enjoy a blast from the past

As I'm sure you've guessed already it was never smooth sailing with the girls.

Glenys & Tegan require 24/7 care with all activities and personal care. Tegan also has Epilepsy. Both Glenys & Tegan have low bone density, yet another aspect of their challenges. Low Bone density for the girls means they are at risk of fracturing bones if they fall. Both Girls have experienced fractures from falls, with Tegan having had six fractures post falls. Breaking a bone causes the girls severe physical, emotional stress and pain. It disrupts the whole household to a point where it becomes difficult for all of us to cope.

The girls have challenged both Tony and Judith. However, their mother Judith went to the ends of the Earth for her girls. Nothing would stop Tony and Judith from making sure the girls were loved, cared for and were heading in the right direction. What was beautiful was the loving, caring nature of all those around the family. It goes without saying but the girls would not be where they are today without the support of not only their family, but also friends, doctors, teachers, specialists. The list is endless. While they cannot say the words 'thank you' they communicate in their own beautiful and unique way, whether it’s a tightly squeezed grip hug from Tegan, or a cheeky smile from Glenys. Both Glenys and Tegan are ever so grateful of the never-ending love that comes their way.

Over the years the girls have kicked down each barrier to achieve milestone after milestone. Judith & Tony did not want their girls to be wrapped in cotton wool. They wanted them to experience as much as they could of what life has to offer and that there would be no boundaries to what the girls could achieve. The initial goal for the girls was to walk, talk and eat sandwiches! They both achieved the momentous goal of walking at the age of 11 with the help of family, OT, Physio and the amazing Jan, a much loved carer. Though they cannot speak, they both communicate in their own unique way. Glenys can eat anything as long as it’s not too hard and happily engages in going to restaurants and picking off the menu what she would like to eat. Tegan still needs a puree diet and needs to be fed. Well as is a habit with the girls, they nail their tasks slowly but surely and move onto the next challenge. Whether its walking, eating, swimming, bowling, eating out at a restaurant, watching a movie, they've done it. They've lived a complicated life, yet one full of adventure and happiness. The biggest unanswered question remained, what was next or what was the 'lifetime' goal for the girls.

Judith & Tony’s wish for their angels was that one day they would live together in a purpose built home just for them and with 24-hour support of course where they would be safe!

Sadly, Judith was diagnosed with Ovarian Cancer and passed away in 2009. Close friends of Judith set up a trust to collect donations in the hope that one day there would be enough money to build the girls this much wished for home.

With that wish and desire always at the forefront the search began to explore what options were available for long term housing for Glenys and Tegan. We are not sure if it was coincidence, pure luck, being in the right place at the right time or maybe divine intervention we stumbled across Owen Jourdain and the team at Illowra Projects who were able to support the girls and undertake the procurement of land and the development of a home for Glenys & Tegan. The house is not expected to be completed until March 2023. We are all so thrilled that the girls will have their own home one day in the not-too-distant future.

the goal for most of us is school, work, maybe university education and eventually save up enough money to afford a house, a car or maybe travel. For Glenys & Tegan this was not a factor, or so we thought. The girls will be able to continue their journey and make their own stories living in their own home together, just as their parents always wished. This website is an invitation for you to have a look at the girls past, present and future ambitions.