I was looking forward to a new life, just me and my precious little angel and was over the moon when Kaitlyn came into my life.

This is our story:

Kaitlyn arrived 2 weeks late on the 29 th of January 2003 at Ballarat Base hospital. She weighed 7.7lbs and her in length measured 49cm. She was a bright healthy baby girl with an Apgar score of 9/10 - twice!

Kaitlyn was a very unsettled baby; she cried a lot and she had trouble with her sucking although she had good weight gain. It became very hard to calm her down at times and only wanted her mum. As Kaitlyn grew she did all the things a baby should do: she rolled, crawled, babbled, and sat. The only thing that bothered people was that she went only to her knees and never tried to stand.

I took her to doctors after doctors, specialists after specialists and all they could say was that I was worrying about nothing and “she was just a sook”. Because Kaitlyn was such an unsettled baby she was seen at the distress clinic at the Royal Children’s Hospital where they gave me some good tips for Kaitlyn’s behavior.

By 18 months she still was not standing and a crease appeared in her upper groin area so the RCH ordered a hip x ray and that was when they found she had acetabular dysphasia, or in other words shallow sockets in her hips. She was then referred to the Orthopedic Department where they did not think her hips had anything to do with why she was not standing and referred her to the child development & rehab centre. They told me she has a very mild cerebral palsy. I was shocked.

While on the waiting list for the MRI Kaitlyn’s crawling deteriorated to a commando crawl, so her MRI was moved forward a month. After the MRI they admitted Kaitlyn and whilst in the RCH they did more tests like blood, urine, eyes, ears and speech and said she had a neurodegenerative disorder and two weeks after that we found out Kaitlyn had Metachromatic Leukodystrophy (MLD).

And this is when my life changed dramatically...