A MUM has revealed her heartbreaking bucket list for her baby daughter, who is not expected to ‘live past two years old’.
Maddyson Brown, from Sydney, Australia, gave birth to daughter five months ago, but when she arrived, it was found she had a terminal disease that would kill her in her toddler years.
Little Lacey was diagnosed with Type 2 Gaucher Disease, a rare genetic complication that causes organs to enlarge, eventually leaving them unable to function.
“Our world was completely torn apart, Maddyson told the Mail Online, explaining that her daughter was only thought to be deaf at birth, until she developed a persistent cough.
“We took her to the doctors to get checked and they said she had a virus she would get over, but the cough continued and we noticed her breathing was unusual,” she added.
Within weeks, Lacey began ‘coughing and choking’ to the point where she started going ‘blue and limp’.
After taking her to the hospital, doctors noticed she had an enlarged spleen and liver, as well as a lazy eye – and they took a blood test to try and confirm what was wrong.
While the family anxiously waited, Lacey had a horrifying ‘episode that she turned completely blue’, and was airlifted to Westmead Children’s Hospital where she was diagnosed.
Now, Maddyson, her partner and their other daughter are trying to make as many memories with Lacey as possible, as the disease means she is not expected to live past two years old.
“Time is not on our side,” Maddyson continued. “We would like to have as many memories as possible with out baby girl.”
The parents are devising a list of experiences they want to do with the baby before she passes away, which includes taking Lacey on her ‘first trip to the beach’.
Maddyson added: “It rips my heart to pieces to say it out loud, but it could help us comfortably say goodbye to our previous baby girl.”
Ticking off one of their bucket list items, the family recently had their first photo shoot, carried out by a family friend.
And while Lacey is currently still in hospital, where she will remain for another month, she will soon head home with a breathing machine so the family can take her out on various experiences.
A family friend, Rachel March, has set up a GoFundMe page to help cover the costs that the family will incur through her ongoing hospital treatments.
Currently, they have already raised £7600 of their £27k goal, which will help cover the costs of feeding tubes and surgeries Lacey may need.
“This disease is horrific and she does not deserve this cruel fate,” Maddyson concluded. “All we can do is enjoy our little girl while we have her.”
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