Hope for Hope
Donation protected
My name is Barbara Hadley and Hope Van Den Berg is my very special grand-daughter. She is a funny, loving, and spirited 7 year old who is greatly loved by her two older sisters Tahlia and Tamika, her Mum Michelle, and her Dad Shannon. But unfortunately, Hope also has a devastating progressive disease called Moyamoya that has suddenly resulted in her requiring urgent brain surgery.
Hope was born as a tiny premi baby and looked like a doll. As her first 2 years went by she was always pale and had some funny quirks. We used to laugh that Hope always preferred eating paper to food. In fact, Michelle had to start hiding the toilet rolls because they would all be munched on, in which case, Miss Hope would just start eating her books instead! Although it seemed funny to us at the time, the Doctors assured Michelle and Shannon it was nothing to worry about, she probably had an iron deficiency and vitamins should perk her up!
Gradually Hope began looking tired all the time and didn't want to play. One day on one of her Doctors visits, Michelle was told Hope had leukaemia. There were no blood tests, no other markers, but the doctor seemed convinced. In panic, we found another doctor for a second opinion straight away. This doctor said Hope was fine and just looked anaemic. No need for any unnecessary blood tests - take her home and keep an eye on her - she'll be fine. The next doctor said the same. One week later, Hope had multiple strokes. They left her unable to use her left side and her right eye and face drooped, Many many hospital visits, scans, tests, pain and tears later, Hope was diagnosed with a rare progressive cerebrovascular disease caused by blocked arteries in her brain called Moyamoya. In fact the name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to unsuccessfully compensate for the blockage.
Over the year Michelle has cared for Hope 24/7. Doctors appointments, hospital stays, scans, blood tests, many appointments to fit a walking brace to her leg in the hope she could walk, physio to help her use her arm and hand, every couple of days, every week, every year since that day of diagnosis. All of this took a toll on the family and tore them apart. Shannon couldn't work any harder, Michelle could never leave home, Tahlia and Tamika were coping best they could.
A glimmer of hope came 2 years ago when a doctor that was treating Hope changed his mind... he was certain Hope did not have all the markers for Moyamoya. Her said her condition was NOT deteriorating and she would be just fine. Just routine checks every 6 months or so, but all would be good. The relief was unbelievable and everyone celebrated.
A month ago, all that changed. Hope had her routine MRI scan and the outcome was devastating. It turns out it was ALWAYS Moyamoya disease... and it certainly was progressive. Hope now only has 15-20% brain function remaining on the left side and the damage is increasing. She has endured many tests since the scan and her next test is an angiogram on 6 October. Brain surgery will then be scheduled for Christmas/New Year period.
The money we are raising will go towards many things. Hope's brain surgery at this stage will be at the Lady Cilento Childrens Hospital in Brisbane. We all live at the Gold Coast. Shannon supports the family as best as possible with his wage as a tyre fitter - but even for a healthy family that doesn't go far. A lot of the bills thankfully are paid for by the public health system, but that doesn't nearly cover the expenses.
I would DEARLY love for Shannon to be able to take time off work to be with Hope during the surgery and the recovery period. Without funding, that is impossible. Michelle also needs to be able to stay in Brisbane close to the hospital, and also afford to have Tahlia and Tamika with her. If not, the girls would have to be fostered out to a carer during this time or stay with family who are also under financial stress. I could go on about the everyday costs of rent, food, petrol, everyday incidentals that are falling behind but everyone knows that bills don't stop because you have a crisis. The money raised would means so much for the entire family. It would mean they could bond together and endure Hope's surgery and recovery together - as a family.
I am sorry for rambling, this is my family, this hurts SO much for everyone. I know financially times are tough for all of us, but ANY amount of donation, even just $5 would mean the world.
For Hope to have her whole family by her side during this time - PRICELESS!
Thank you all so much for reading this far. I will post regular updates on Hope's progress.
Hope was born as a tiny premi baby and looked like a doll. As her first 2 years went by she was always pale and had some funny quirks. We used to laugh that Hope always preferred eating paper to food. In fact, Michelle had to start hiding the toilet rolls because they would all be munched on, in which case, Miss Hope would just start eating her books instead! Although it seemed funny to us at the time, the Doctors assured Michelle and Shannon it was nothing to worry about, she probably had an iron deficiency and vitamins should perk her up!
Gradually Hope began looking tired all the time and didn't want to play. One day on one of her Doctors visits, Michelle was told Hope had leukaemia. There were no blood tests, no other markers, but the doctor seemed convinced. In panic, we found another doctor for a second opinion straight away. This doctor said Hope was fine and just looked anaemic. No need for any unnecessary blood tests - take her home and keep an eye on her - she'll be fine. The next doctor said the same. One week later, Hope had multiple strokes. They left her unable to use her left side and her right eye and face drooped, Many many hospital visits, scans, tests, pain and tears later, Hope was diagnosed with a rare progressive cerebrovascular disease caused by blocked arteries in her brain called Moyamoya. In fact the name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to unsuccessfully compensate for the blockage.
Over the year Michelle has cared for Hope 24/7. Doctors appointments, hospital stays, scans, blood tests, many appointments to fit a walking brace to her leg in the hope she could walk, physio to help her use her arm and hand, every couple of days, every week, every year since that day of diagnosis. All of this took a toll on the family and tore them apart. Shannon couldn't work any harder, Michelle could never leave home, Tahlia and Tamika were coping best they could.
A glimmer of hope came 2 years ago when a doctor that was treating Hope changed his mind... he was certain Hope did not have all the markers for Moyamoya. Her said her condition was NOT deteriorating and she would be just fine. Just routine checks every 6 months or so, but all would be good. The relief was unbelievable and everyone celebrated.
A month ago, all that changed. Hope had her routine MRI scan and the outcome was devastating. It turns out it was ALWAYS Moyamoya disease... and it certainly was progressive. Hope now only has 15-20% brain function remaining on the left side and the damage is increasing. She has endured many tests since the scan and her next test is an angiogram on 6 October. Brain surgery will then be scheduled for Christmas/New Year period.
The money we are raising will go towards many things. Hope's brain surgery at this stage will be at the Lady Cilento Childrens Hospital in Brisbane. We all live at the Gold Coast. Shannon supports the family as best as possible with his wage as a tyre fitter - but even for a healthy family that doesn't go far. A lot of the bills thankfully are paid for by the public health system, but that doesn't nearly cover the expenses.
I would DEARLY love for Shannon to be able to take time off work to be with Hope during the surgery and the recovery period. Without funding, that is impossible. Michelle also needs to be able to stay in Brisbane close to the hospital, and also afford to have Tahlia and Tamika with her. If not, the girls would have to be fostered out to a carer during this time or stay with family who are also under financial stress. I could go on about the everyday costs of rent, food, petrol, everyday incidentals that are falling behind but everyone knows that bills don't stop because you have a crisis. The money raised would means so much for the entire family. It would mean they could bond together and endure Hope's surgery and recovery together - as a family.
I am sorry for rambling, this is my family, this hurts SO much for everyone. I know financially times are tough for all of us, but ANY amount of donation, even just $5 would mean the world.
For Hope to have her whole family by her side during this time - PRICELESS!
Thank you all so much for reading this far. I will post regular updates on Hope's progress.
Organizer
Barbara Hadley
Organizer
Southern Lamington, QLD