Sarah

What are some of the unique challenges of parenting when one of your children has a rare disease or disorder?
The countless hospital trips; you learn quickly how to be creative with different tasks to do on the way to try and keep them entertained! Compensating for the extra attention the child who is affected gets. Having to explain to the people who don't know them, and also family.

What was the process of diagnosis like for your family?
It was a long one. I knew there was something wrong 2 days after she was born. It took 3 years to finally get the diagnosis. There was lots of fighting and arguing with people who thought I didn't know what I was on about.

What additional tasks/challenges take up your time related to caring for a child with a rare disease or disorder?
Dealing with school and having to attend extra meetings to make sure she’s coping well with her extra needs. Dealing with meltdowns and a lot of daily physio.

What are your hopes and/or dreams for your child who has the rare disease or disorder?
That she can live a good and healthy life.

How has having a sibling with a rare disease or disorder affected your other children?
My time is taken up with my daughter, so I gave to come up with ways to spend time together with my other children. We have to go to the hospital etc., so it means time off etc. too.

What are some practical things that other families can do to help or support you?
Be there. Be an ear to talk to and vent at. I think the frustrations can be overwhelming at times. That's where having someone else with a special needs kid becomes really useful.

 

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