Evie's Bucket List
Donation protected
At 7:52am on the 22nd of October 2015, weighing 4 pounds 8 ounces (2040 grams) precious 'little' Evie was welcomed into the world and instantly stole the hearts of everyone around her.
Evie has had a number of health challenges which have kept everyone guessing, however through the tireless efforts of Evie's doctors & many specialists she now has an official diagnosis of Zellweger Spectrum. Zellweger Spectrum is a rare metabolic condition that affects just 1 in 50,000 babies. Currently, there are only 5 babies in QLD with this condition and it’s so rare that it took many specialists more than 3 months to find out what was wrong with Evie.
Zellweger Spectrum has so far presented a number of challenges to Evie. She has feeding difficulty and is fed EBM (expressed breast milk) by nasogastric tube when she is too tired to take EBM from a bottle. She has low muscle tone due to malabsorbtion which makes her appear floppy & like a newborn. Her body can’t absorb fat and therefore she has had limited weight gain so at 15 weeks old, she is still smaller than most newborns and weighs just under 3kg (almost 6 pound 7oz). Evie also has hearing loss in both ears and is being fitted for hearing aids in February.
Evie’s incredible journey has seen her in and out of hospital, including 3 weeks in special care at birth, a bowel resection operation at 8 weeks old and a further hospital stay for a virus and tummy troubles when she was 11 weeks old.
Against immense odds she has the most engaging personality and makes her mums unbelievably proud of her every single day.
What does Zellweger spectrum mean for Evie? So far, it has meant a lot of tears for her Mums and those around her, as there is no treatment and no cure for this rare condition. Zellwegers affects the cells in the body, particularly in vital organs like the brain, liver, spleen and kidneys, eventually leading to failure of one or more of these organs. It is a terminal condition & Evie is not expected to live past her 1st birthday.
With the devastating news that Evie’s time here is limited, Lauren and Nicky are determined to fill Evie’s life with as many adventures, life experiences and precious memories as time allows.
With the help of loving family and friends 'Evie's Bucket List' has been created to help bring as much happiness and fun into Evie’s life as possible. All donations will go towards giving Evie and her family these experiences together as well as contribute to day to day expenses, allowing them more time away from work to spend these precious moments with Evie.
Evie was lucky enough to be born into the most generous, warm and loving family that a little girl could ask for. They themselves would not feel comfortable asking for help directly, but as their family and friends we want them to know how truly loved and cherished they are.
As little or as much as you can donate towards this cause will help assist the Dyer family in their time of need. If you are unable to help financially, you can still support Evie by sharing this campaign with your friends and leaving a message of encouragement. Updates on Evie’s health and her achievements will also be posted through this site as she progresses.
We thank you in advance for your generosity and for keeping Evie in your thoughts.
More information about Zellweger Spectrum is available through the following reliable website:
Rarediseases.org
Evie has had a number of health challenges which have kept everyone guessing, however through the tireless efforts of Evie's doctors & many specialists she now has an official diagnosis of Zellweger Spectrum. Zellweger Spectrum is a rare metabolic condition that affects just 1 in 50,000 babies. Currently, there are only 5 babies in QLD with this condition and it’s so rare that it took many specialists more than 3 months to find out what was wrong with Evie.
Zellweger Spectrum has so far presented a number of challenges to Evie. She has feeding difficulty and is fed EBM (expressed breast milk) by nasogastric tube when she is too tired to take EBM from a bottle. She has low muscle tone due to malabsorbtion which makes her appear floppy & like a newborn. Her body can’t absorb fat and therefore she has had limited weight gain so at 15 weeks old, she is still smaller than most newborns and weighs just under 3kg (almost 6 pound 7oz). Evie also has hearing loss in both ears and is being fitted for hearing aids in February.
Evie’s incredible journey has seen her in and out of hospital, including 3 weeks in special care at birth, a bowel resection operation at 8 weeks old and a further hospital stay for a virus and tummy troubles when she was 11 weeks old.
Against immense odds she has the most engaging personality and makes her mums unbelievably proud of her every single day.
What does Zellweger spectrum mean for Evie? So far, it has meant a lot of tears for her Mums and those around her, as there is no treatment and no cure for this rare condition. Zellwegers affects the cells in the body, particularly in vital organs like the brain, liver, spleen and kidneys, eventually leading to failure of one or more of these organs. It is a terminal condition & Evie is not expected to live past her 1st birthday.
With the devastating news that Evie’s time here is limited, Lauren and Nicky are determined to fill Evie’s life with as many adventures, life experiences and precious memories as time allows.
With the help of loving family and friends 'Evie's Bucket List' has been created to help bring as much happiness and fun into Evie’s life as possible. All donations will go towards giving Evie and her family these experiences together as well as contribute to day to day expenses, allowing them more time away from work to spend these precious moments with Evie.
Evie was lucky enough to be born into the most generous, warm and loving family that a little girl could ask for. They themselves would not feel comfortable asking for help directly, but as their family and friends we want them to know how truly loved and cherished they are.
As little or as much as you can donate towards this cause will help assist the Dyer family in their time of need. If you are unable to help financially, you can still support Evie by sharing this campaign with your friends and leaving a message of encouragement. Updates on Evie’s health and her achievements will also be posted through this site as she progresses.
We thank you in advance for your generosity and for keeping Evie in your thoughts.
More information about Zellweger Spectrum is available through the following reliable website:
Rarediseases.org
Organizer
Tegan Bellew
Organizer
Labrador QLD
