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 plane. 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.
How do you convey your sincere thanks to everyone who has so kindly donated and shared our beautiful little boy? Saying thank you just doesn’t seem enough.
This week has been a tough one. Archie has developed aspiration pneumonia and given his mummy and daddy a terrible fright. He’s such a beautiful little boy that means the world to our family.
There is no miracle cure, but there is the miracle of strangers, family, friends and communities coming together to support a young family make special
memories with their baby boy.
The past 6 months sure have been a rollercoaster ride of emotions.
While Archie’s diagnosis of Tay Sachs has been hard to digest it has brought some amazing other families into our lives who are dealing with the same ride. All have entered this ride at different stations but ultimately arrive at the same destination. The duration is the hardest unknown each family has to endure.
However with the sadness comes lots of special memories to last a lifetime. Archie has been blessed by so many of you graciously donating, sharing, praying and sending love and light from near and far.
He has spent a lovely 2nd birthday celebration in the beautiful Batemans Bay. The Starlight foundation gifted some wonderful time for what will likely be Archie’s last big traveling holiday.
Thank you to Mogo Zoo, The Boat Shed, Double Exposure Photography- Seline and Cathy you are amazing girls, Bateman Bay Holiday Home, The River Moruya.
Thank you to Paul Smithers who so kindly helped Archie getting a pram and accessories to suit his special needs.
To everyone in Hillston who continually support everyone in the community, thank you for being so caring and supportive.
Everyone has made such a huge contribution to making beautiful memories.
Thank you so very very much. May each and everyone of you have a very merry and joyous Christmas. May you be blessed with love, health and happiness
There are so many families in need of assistance due to the costs involved when families become entwined in medical diagnosis.
Some are able to still live life with adjustments, but they need assistance along the way. Others have the unfortunate news that their illness is terminal and have to find a way to function daily to keep up with their financial obligations. No diagnosis is easy for a family to comprehend.
Their are so many families receiving sad news and left to find coping mechanisms to get through the days that follow.
It’s the love, support, enquires, the little things that help keep the families going.
There are lots of bad days but also days that need to be treasured while trying to give and live the best memories.
We are very fortunate to have the support and care from the Hillston community daily, foundations that have come on board to help with equipment.
Thank you all so very very much
No one person should compare their life to another. Their perfect life may be hiding just as many downs as you,
We all need to make the most of every day with those you love and be forever grateful to those you meet along the way and touch your life for whatever reason.
Thank you so very very much for your continued support in either donations or sharing Archie’s story.
Today I had the opportunity to meet Islah who also has Tay Sachs.
Be kind to one another always because there will always be someone who benefits from your smile, generosity or just a few kind words.