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Alexis' Story

For kids like Alexis, there should be more to childhood than just being sick.

When Alexis was born, her mother Kristi knew she was going to be a fighter from the very beginning.

Alexis smiling in her wheelchair in hospital

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Born at 28 weeks, Alexis who is now 3 years old spent 11 weeks in the neonatal ward before her family were allowed to take her home.

As Alexis started to grow, it became obvious that something was not right. At six months of age, baby Alexis stopped using her legs.

Nine days after her 2nd birthday, Alexis was diagnosed with Spinal Muscular Atrophy, type two. The result of this condition means that Alexis experiences muscle weakness. She is unable to bear weight on her legs and cannot lift her head up. Because of this, Alexis’ respiratory system is severely impacted.

“It makes her cry with sickness because she’s not strong enough. It just sits there and develops into pneumonia, chest infections, she’s had it all. Every time she has a cold she is in hospital – she can’t shake it. A normal healthy child when they get sick they take about a week to get better, she takes about a month.” – Kristi

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The only way for Alexis’ sickness to be cleared from her system is through the use of a Cough Assist Machine. This machine imitates the act of a cough – a quick breath of air effectively removing secretions from the lungs. The only one available to the family was through the hospital.

“The last time she was sick she was there for nine days.” – Kristi

In a normal week, Alexis has appointments four days a week at the hospital. On top of the stress of having a sick child, caring for another child at home, and the financial stress, Kristi has been rejected for the carer’s pension.

“I just want her to be as happy and as healthy as possible I really can’t ask for much more.” – Kristi

“There is a life expectancy with her condition, we don’t know – she could pass in early adulthood or she could surprise us all and get to 40 or something like that. Her future is just unknown, we don’t know what to expect.

Equipment such as a cough assist machine helps so much to give her better quality of life. With the cough assist machine, Alexis spends less time in hospital so we are able to give the assistance at home.” – Kristi

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