Hannah Bonnie Raie was born on January 29th 2014. At the time of her birth we didn't know that she had been born with a genetic condition called Spinal Muscular Atrophy, Type 1.
On the 1st of April, we had the devastating news that not only did our healthy baby girl have this genetic anomaly, but it was also the biggest killer of babies under the age of 2, and those children and babies diagnosed with type 1 were unlikely to reach their 1st birthday.
Fast forward a few months, after many, many medical appointments, including physios, a chiropractor, respiratory specialists, amongst others, we were informed by our lovely and caring palliative care team that we would be lucky if Hannah made it to Christmas.
So all systems go, we quickly organized an early Christmas with as many family members that could make it and a big party was had! It was a wonderful celebration for our girl to be part of, we were able to introduce her to some very important Fisher family traditions and just be together as a family at this important part of Caz, Steve and Hannah's journey in life.
We had made it to Hannah's 8 month birthday in September easily, just before our early Christmas. Hannah still had her bad days, but there were more good days than bad at that point. Coming towards the middle of October, it was no longer possible to take Hannah out in the car, as she was struggling so much with her breathing and we didn't have access to a car seat that would allow Hannah to lie down, which meant that all of her appointments were now at home.
With plenty of giggles and smiles from Hannah, we were enjoying all of the family time we were able to have at home, but it was getting more obvious that our beautiful girl was starting to use most of her energy just to breathe. With only one week to go before her 9 month birthday, Hannah had reached the point of exhaustion. After a particularly rough morning, Hannah Bonnie Raie Pearce decided that she would peacefully say goodnight for the last time to her family during her midmorning nap.
Hannah contributed to so many lives and so we want to continue this tradition of giving.
We would like to raise funds for the following organisations that helped us out with Hannah, her care and also looked after us.
Queensland Ambulance Service
QUEENSLAND AMBULANCE SERVICE
The ambulance officers and paramedics have been wonderful every time we had to call them out for Hannah's care. These people are amazing! They looked after Hannah after some very scary moments and always looked after us as well.
So to acknowledge this help and all the other people they help, we have decided to put a tab on at Fort Specialty Coffee, which is our favorite coffee shop, for ambulance officers to get a good cup of coffee when needed.
The owners and staff at Fort were aware of Hannah’s condition and made all of us welcome every time we came in. This year we both had our birthday parties at Fort. It was one of the very few places we could take Hannah comfortably.
The Fort Specialty Coffee
6 Endeavour Blvd, North Lakes QLD 4509
(07) 3[phone redacted]
Heartfelt provided a professional photo shoot for Hannah and ourselves in the comfort of our home. This gave us beautiful photos in a safe setting for Hannah. We were so blessed by the love and care that Hannah’s photographer took both with the actual taking of photos and her presentation of the finished product.
Heartfelt provide complimentary individual or family portrait sessions for families who need special memories within a limited time frame. They are a flexible service that comes to client’s homes or to hospitals depending on the need.
We and all of our family have been so blessed by these photos and would like to help continue to make this service available to other families.
Money raised will go towards the Heartfelt Camera Project.
“We find that many NICUs, maternity wards and social work departments have cameras that aren't great, and often due to urgency or location, these cameras provide the only images families have of their child.”
"We have wanted to make a difference in this area for a while and starting with the great generosity of a family that used our services recently as well as the generosity of their extended family and friends, we are starting a program where we are gifting a quality compact camera, small printer and an in-service presentation/workshop from a Heartfelt member about how to take better photos for families. Thank you to the family of Emerikus Land for making this possible for the first batch of kits.”
If you would like to contribute towards a portion of the cost of this service the current kit price is $860.
Each kit includes;
Quality compact camera (engraved) chosen for its ability to work in low light situations and to work close up.
A compact printer that can be taken into the room so families can be given a photo straight away.
Paper and ink supplies
USB of Heartfelt Videos
Access to Heartfelt video tutorials
Montrose were the first people there to assist with Hannah’s care teaching us the skills we needed to operate equipment and practical skills to help with keeping Hannah comfortable.
They provided us with much needed equipment, support, and advice for the duration of Hannah’s journey. Our team was amazing, consisting of a physiotherapist, speech pathologist, social worker, and an occupational therapist, they regularly visited our home and were always accessible by phone when needed.
We would like to raise some money that we can put towards their next fundraising drive, to help support the amazing work they do providing in home support to the various families under their care.
Bearhands provide professional impressions to preserve special moments in your child’s life.
Claire has been a wonderful support. The care she took creating these precious memories for us mean the world to us. She was gentle and kind when working with Hannah.
Claire works with families in different stages of their journey. For those with a limited lifespan to those who are suddenly taken from us and creates beautiful memories for those left behind.