999 Reasons

This is two and a half year old Kayla who has been through so much and still manages to smile after the challenges of Leukemia and a diagnosis of Down Syndrome.

I am Kayla's mum and this is my story. I believe Kayla was just born to make everyone around her smile and teach tolerance. She had no health complications at birth, just looked a little different and seemed a little floppy. Although I had the perfect pregnancy, we were told from prenatal testing we were at a higher risk of having a child with Down Syndrome than usual, the follow up ultrasound all looked normal and we went ahead without conclusive testing. So when it was confirmed that Kayla had Down Syndrome when she was three days old, the emotions were very mixed. What would this mean to our future and her development?

We were one of the lucky ones who got positive information from day one, from a range of sources like support group Lifestart, the hospital social worker and the NSW Down Syndrome Association . We were given practical advice to make her stronger and told what she could achieve in life, not how impossible our lives would be. So we took our baby home like anyone else would. Our friends and family were shocked but really supportive and we all just took it one day at a time. 

The first year was a breeze. She slept better than any baby I met. She breastfed well. She was a bit slower, but was meeting all her development milestones - eventually. We took her to a local Mother's Group and Gymbaroo with regular kids just like any normal family. Our early intervention program with Lifestart provided physiotherapy, speech and occupational therapy which helped push her to want to experience all life had to give her and put us in touch with other local families in our situation whom we could share our thoughts and frustrations with.

Our hard work with her paid off. I remember my mum saying just when you think she isn't doing something - she seems to just get it. We may have had to show things to her 50 times instead of 10 for most other kids but it was so true - she eventually just clicked. You have to be patient having a kid with a disability and it helped to meet other kids with DS through the associations, who were living happy, ordinary lives - going to regular school, being part of a group. Everyone stopped to say hi to us and life seemed ok, that we could handle this.

Then came our biggest hurdle. The week after her first birthday Kayla was diagnosed with Leukaemia (AML). What a shock we got - here was a healthy kid who had only had one cough in her life. First a few red spots (petechiae) that no Doctor could explain, let alone worry about, then a routine yearly blood test put our world into a spin and the next thing we knew she was booked in for chemo. Research told us it appears the incidence of Leukaemia is higher in kids with DS but that didn't make the diagnosis easier to handle.

Kayla had six months of intense chemotherapy and coped with it all as well as could be expected with a few infections giving us a scare but at least the Leukaemic cells went away quickly. We met some great families and the staff at the Childrens hospital at Westmead were wonderful, though the 1 hour trips to the hospital and two week stays when she got an infection got extremely tedious especially when I then found out I was pregnant. We just had to take it one day at a time. But Kayla for the most part seemed to love all the attention, always clapping and waving at all the nurses, and making the most of her hospital stays by attending playgroup and having music sessions, even when her immunity was at its lowest, which made it all easier. We continued her physical and speech therapy through it all and she continued to develop well. But we also learnt a lot during those six months about the body and which cells played which role. Our sentences now consisted of neutrophils, platelets, white cells, central lines, septic infections, and even our family knew what we were talking about by the end. We couldn't have got through it all so easily without the support from the hospital, our family, neighbours, friends and support groups like Lifestart and the NSW Down Syndrome Association.

One year after finishing treatment and Kayla is still in remission and has to have regular check ups for seven years but we take each day as it comes and have faith she will come though life with her fighting spirit in tact. At two and a half Kayla was saying a few words, signing a lot and started walking not long after her second birthday after a lot of speed crawling, cruising and frustration from me. It has been an interesting journey learning to sign - sharing books with her, seeing her tell us she can hear the birds or dog outside. Thank goodness we started signing early so as not to miss this important time for communication. Now the words or sounds are coming and we can understand her I still worry how she will go when she starts preschool and want to talk to her friends. Getting a brother Asher whom she loves to cuddle but also get jealous of when I am paying him too much attention at this age has been great. I can't wait to see their relationship develop and hope he will push her development along and not just frustrate her.

At three, Kayla is making many more sounds and attempting words (especially now she has mastered "Dora" the explorer and Mum). But most words are still hard to understand so again we are thankful for signing and we are working on phonics and getting clearer letter sounds from her but I think this is a never ending battle. She is running and climbing and dancing but still learning to slow down on hills, take on steps and how to actually lift her feet off the ground when she jumps! She is feeding herself and brushing her teeth, taking her socks and cardigans off herself and knows most body parts. Puzzles and books are all the favourite and anything that makes a noise helps with fine motor development. We think she is just amazing the things she achieves - every little step at a time. 

We will try to make her life as easy as it can be and hope educating people we meet about DS allows her a more regular part in society, even if the future is a little scary at times. Having a child with a disability makes you more aware of your child's strengths and weaknesses and we love Kayla for everything she has taught us and still has to show the world. It has bought my husband and I closer together and we wouldn't change her for anything.