Archies Bucketlist

Archie Bear
We now have a shining angel looking down on us all.
Archie gained his angel wings on 2nd May.
We have celebrated his little life befitting the Little superhero he was.
Rest in peace baby bear while flying high sweet boy.

Archie is 22 months old.  Hes the apple of his mummy and daddy's eyes.  He has a gentic disorder  called Tay Sachs that is claiming his little life.

We dont know how long Archie will grace this earth with us all so we need your help and support to enable Caleb, Helen and Archie to make as many wonderful lifetime memories as possible in the time they have with him.

Archie was born in 2015 as a healthy happy little baby.  He celebrated his first birthday sitting up by himself and ripping open the wrapping on his gifts so lovingling selected for him.

Early 2016 Archies develepment started to regress, his first visit to Sydney Childrens Hospital in Randwick was October 2016.  After numerous tests he was diagnosed with Hemi hypoplasia.  Ok that was something that we could work with, it was doable.  Archie attended swimming lessons, and visits to Early Intervention trying to easy the symptoms we thought we were manageable.

In May 2017 and further regression Archie was tested for SMA (spinal muscular dystorphy), it was a blessing when those results came back negative.  The next thought was Cerebal Palsy, so an appointment was made to visit SCH again in June to get a new diagnosis and treatment plan.  Another doable disorder we could work with.

Heres where Archies story turns 
Archie arrived at SCH to see his neurologist as a happy little man eating, drinking with limited movement.  Archie has never experienced fully crawling, walking for the first time, speaking fully.  He depends on his mum and dad to do every little thing for him.
We had MRI's booked along with a barage of other tests and received the worst possible news ever.
Caleb and Helen were told Archie had a limited life span, they were not given a name to his diagnosis until the blood tests came back to confirm.
Archie had a nasal gastric feeding tube inserted and put on the waiting list for surgery to have a feeding peg inserted into his tummy.
They went back home 700km away from the doctors and hospital to digest his diagnosis and try to live a normal life routine.

August saw his last trip to SCH to have his little operation and finally recieve the name of his disorder.
Tay Sachs, is a rare disorder that progressively destroys never cells in the brain and spinal cord.  His prognosis is devistating to the family.  Joining groups with other families with the same diagnosis is comforting until you hear that most are only surviving to 2 years old.
My beautiful little grandson turns 2 in november, so this Grammy is trying to give Caleb, Helen and Archie a means of spending as much quality family time together without the excalated burden of bills, both general and medical.  They are a part of a beautiful country town where everyone will come together and support where they can.  

If you could help in any small way with donating as little as $5 - $10 or if your circumstance are stretched to the max like us if you could please just continue to share our fund raising efforts.

Hes worth every tear that we have cried and going to cry.  Hes such a beautiful little soul.

thank you for reading about our plight and helping towards managing the financial burdon of daily living.

Grammy Mel


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Melissa Bartholomew 
New South Wales
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