Zac Pyper, 3, Australia


Being Zac's mum is the greatest gift bestowed on me. I love him so much and he makes me laugh a 1000 times a day. There is nothing I wouldn't do for him and I'm very protective of him. 

I do suffer a lot from anxiety these days. I don't like to think about what the future holds, but I'm constantly worried of losing him. When Zac gets a cold, he seems to take 2 weeks to get over it. He struggles to breathe and I hold a torch to his face to make sure his lips aren't turning blue. This is due to the bone calcifying in his face and narrowing his nasal passage. When he throws up in the middle of the night, he doesn't roll over. Luckily, I've always been woken and I'll roll him over to prevent him choking. I have him sleeping in the same room as me always so I can keep a close eye on him. 

I'm not able to do much work so financially I'm also struggling. Zac and I live with my parents to help financially and emotionally. They are the only people I trust to look after Zac so I can work, but Zac suffers separation anxiety when I'm not with him so I try to limit my shifts of 3 hours to 2 a week.

Nobody is comfortable taking care of Zac other than my parents. I've even had childcare centres turn us down. My parents have accompanied us on many doctors’ appointments so they are the only other people that know all his needs. 

Our days are regularly filled with therapy or appointments. We see approximately 10 specialists and 3 therapists. Zac can't walk and can't verbally communicate so it's frustrating for both of us sometimes because he can't tell me what he wants and I'm not sure if he understands me, but we manage.

He is smart because he has a fantastic memory of the route we take to get to different places. He knows the names of all the Thomas the tank engines and when he is watching the series, he will run off to get the same train for each episode before the episode has started. He has over 100 trains and when we go to the shops, he points me the way to find the Thomas aisle and picks a new train. He is very good using the iPad and often teaching me new things. He learnt all his numbers, colors and shapes using the iPad and is working on letters and words now.

"Zac has a laugh like Ernie from Sesame Street and is always happy. He sees the funny side in situations where it might not be appropriate.  He is a real problem solver."

We rely heavily on routine because he doesn't communicate if he is hungry or thirsty or if he needs to use a toilet; therefore, he is not toilet trained yet. He has a very limited range of food that he will eat due to problems with chewing and swallowing with his smaller bottom jaw.

It's hard to watch Zac play with other kids because he wants to do what they are doing, but physically for him it might not be safe and it devastates him when I stop him. One time he was invited to a Mcdonald's party and all the kids sat on high stools. I grabbed a high chair for him and he was so upset because he wanted to be like the other kids and not treated like a baby. Another example is when the kids in the street all come out onto the road to play. Zac wants to join in, but the road is too hot and rough for him to crawl on. I've bought knee pads for him to wear, which are a bit small because of his condition and the way the knee has formed, but it doesn't help because he gets tired quickly. I carry him but my back aches and therefore we don't stay outside for long.

I don't know if these types of situations make Zac sad or if he realizes it's his disability that holds him back. He often plays alone with his trains and doesn't play with other kids. It takes him a while to warm up to them.

While shopping and playing in the playground, I've heard other kids saying to their siblings or parents, "look at that boys face". While at first I could have handled those situations better, I have figured out that if I go up to the child and introduce Zac, they are not scared. I cry easily since having Zac.

              - Sheri Pyper (Zac’s mother)