Mum devastated after finding out baby girl has a rare disease and won't live past two years old

A mother has revealed her heartbreak after she found out her baby will not live ‘past two years old’.

Maddyson Brown, from Sydney, gave birth to her daughter Lacey five months ago, and while she thought at first she just had problems with her hearing, she later found out that Lacey had terminal type 2 Gaucher disease.

This a rare and genetic disease that means Lacey will not not live ‘past two years old’.

‘Our world was completely torn apart,’ Maddy told FEMAIL.

The mum-of-two is now rushing to create as many memories with her daughter as possible before she loses her forever.

A mother has revealed her heartbreak after she found out her baby will not live ‘past two years old’ (Maddyson pictured with her daughter, Lacey)

Maddyson Brown gave birth to her daughter Lacey (pictured) five months ago, andbshe later found out that Lacey had terminal type 2 Gaucher disease

Maddy explained that she didn’t notice anything especially the matter with her daughter until the beginning of January when she developed a cough (Lacey pictured with her older sister)

Maddy explained that she didn’t notice anything especially the matter with her daughter until the beginning of January this year when she developed a cough.

‘We took her to the doctors to get checked and they said she probably has a virus she would get over,’ Maddy said.

‘The cough continued for about 3/4 weeks and then we noticed Lacey’s breathing was unusual when she slept so we took her up to Bathurst base, where they noticed she has a large spleen and liver, and also a lazy eye.’

Now, Maddy, her partner and their other daughter are trying to make as many memories with little Lacey before they lose her – they want to take her to the beach (the Brown family pictured)

Lacey is still at Westmead Children’s Hospital, where she will remain for another month, before heading home with a CPAP machine to help her to breathe (pictured with her sister)

What is Gaucher disease?

* Gaucher (go-SHAY) disease is the result of a buildup of certain fatty substances in certain organs, particularly your spleen and liver. This causes these organs to enlarge and can affect their function.

* The fatty substances also can build up in bone tissue, weakening the bone and increasing the risk of fractures. If the bone marrow is affected, it can interfere with your blood’s ability to clot.

* There are different types of Gaucher disease, and signs and symptoms of disease vary widely, even within the same type. Type 1 is by far the most common.

* More rarely, Gaucher disease affects the brain, which can cause abnormal eye movements, muscle rigidity, swallowing difficulties and seizures. One rare subtype of Gaucher disease (type 2) begins in infancy and typically results in death by two years of age.

Source: Mayo Clinic

Within weeks, Lacey was ‘coughing and choking’ to the point where she ‘started going blue and limp’.

As the nervous parents awaited the results of blood tests to find out what was wrong, Maddy said her daughter ‘had an episode so bad that she turned completely blue’.

Lacey was swiftly airlifted to Westmead Children’s Hospital where she had more tests and was then diagnosed with Gaucher disease type 2.

This is a rare genetic disease that is the result of a buildup of certain fatty substances in certain organs, particularly your spleen and liver.

Now, Maddy, her partner and their other daughter are trying to make as many memories with little Lacey before they lose her.

‘Time is not on our side and we would like to have as many memories as possible with our baby girl,’ Maddy said.

The parents are currently writing a bucket list of experiences they want to do with Lacey before she dies – which includes taking Lacey on a ‘trip to the beach’ for her first trip.

‘It rips my heart into pieces to say it out loud but it could help us comfortably say goodbye to our precious baby girl,’ mum Maddy said (Lacey pictured with her sister)

Maddy and her partner also want to take some time off work in order to look after Lacey:

‘It rips my heart into pieces to say it out loud but it could help us comfortably say goodbye to our precious baby girl,’ she said.

‘I would give her my life if I could. No parent or child should have to go through this.’

They recently had a family photo shoot, which was carried out by a friend of the family Gabriella Watson.

‘This disease is horrific and she does not deserve this cruel fate,’ Maddy said. ‘All we can do is enjoy our girl while we have her’ (the Brown family pictured)

Right now, Lacey is still at Westmead Children’s Hospital, where she will remain for at least another month, before heading home with a CPAP machine to help her to breathe.

‘She is currently on a kangaroo pump (feeding pump with NG tube) and is being assessed for PEG stomach surgery (an endoscopic procedure in which a tube is passed into the stomach used for feeding bypassing the mouth and throat),’ a friend of the family, Rachel March, said.

Rachel has also set up a GoFundMe page to help with costs that the family will incur through hospital tests and treatment.

At present, they have raised $14,000 of a $50,000 goal.

‘This disease is horrific and she does not deserve this cruel fate,’ Maddy said. ‘All we can do is enjoy our girl while we have her.’

To keep up to date with Lacey’s journey, follow Rachel March here and Maddy Brown here.