My name is Rachel and I’m a friend of Maddyson’s.
We met a few months ago when my son and her daughter Lacey shared a room at Westmead Children’s Hospital. Maddyson and Brodie are some of the kindest people we have ever met and I write this with the heaviest heart.
In the past week, Lacey has been diagnosed with a painful and downright cruel disease which is going to affect her quality of life and cut it very short.
It is not looking good for Lacey at the moment and her family are beside themselves. I cannot even fathom how Maddyson and Brodie must be feeling.
They have got A LOT on their plates and financial stress is the absolute last thing they need right now.
Lacey has a big sister named Charlotte who is three and deserves only the best memories of her baby sister.
PLEASE. If you have any money no matter how big or small to help this beautiful little girl and her family through this horrific time it would be much appreciated.
If you are not in a position to donate, PLEASE SHARE!!!! Pray, and keep this sweet little soul in your thoughts.
Funds will go towards:
- Travel costs
- Hospital parking
- Medical expenses
- Lacey’s bucket list
- Palliative care
Please read about Lacey's journey below (written by her strong mama).
‘Lacey’s journey started when she failed her newborn hearing tests and was diagnosed with Auditory Neuropathy Spectrum Disorder and had further testing between The Royal Institute For The Deaf and Blind, Westmead Children’s Hospital and Australian Hearing.
Macquarie nation hearing told us she could hear low medium and high pitch and was hearing it quite quickly so she needed an MRI to see if she needed a cochlear implant or a hearing aid.
At the start of January she had a cough. She was taken to the doctors to get checked and they said she probably has a virus which she would get over. The cough continued for about 3/4 weeks and then we noticed her breathing was unusual when she slept so we took her up to Bathurst base, where they noticed Lacey has a large spleen and liver, she also has a lazy eye.
Lacey’s stats were dropping in her sleep so we were taken by ambulance to Westmead Children’s Hospital where she then saw a big team of doctors from neurology, pulmonology, cardiology, metabolic specialists, sleep specialists, speech pathologists and an ophthalmologist.
Lacey showed signs of discomfort and choking while feeding so she was put on a nasal gastric tube until they were able to do a barium swallow test.
After the barium swallow test showed that Lacey was aspirating her feeds and seemed to have bad reflux, her bottles were thickened with a special type of formula and we were sent home with a follow up appointment to see how she went.
Lacey’s coughing and choking started to increase to the point of she started going blue and limp so we were in and out of Bathurst Base with her choking episodes while we were also waiting for blood tests to come back.
On the 13th of March, Lacey had an episode so bad where she turned completely blue.
She was airlifted to Westmead Children’s Hospital that night and had more tests done over the next couple of days.
On the 18th of March we got the blood test results back and our world was completely torn apart.
Lacey was diagnosed with Gaucher disease. It is a very rare and cruel genetic disease.
We are waiting to know if Lacey has 1 or 2
Type 1 can be treated but number 2 is terminal. Children with type 2 do not live past the age of <2 years old.
With that being said, we will have to focus on Lacey’s quality of life with palliative care until her body can no longer fight.
The funding generated through this campaign would help us treasure our time with Lacey as a family and also take the financial pressure off my partner so that as a family we could all spend as much time with her as possible. Time is not on our side and we would like to have as many memories possible with our baby girl.
We are currently trying to write a bucket list for our little girl and I honestly don’t even know how any parent could write a bucket list for their 5 month old, but this money would help us have time off work to be with our daughter. It would also help cover travel and living costs back and forth to Sydney, and the care she would need to the end of all of this.
It rips my heart into pieces to say it out loud but it could help us comfortably say goodbye to our precious baby girl.
This disease is horrific and she does not deserve this cruel fate. All we can do is enjoy our girl while we have her. I don’t even know how to ask people to understand or help us in this situation but I’m just begging for help so that we can hold on to our baby for as long as we can without any financial strain.
I would give her my life if I could and i'd do anything not to be in this situation. No parent or child should have to go through this.’