Lisa’s journey with Katie
Tell us a bit about your family?
We are parents to 3 gorgeous kids, Caleb, 13, Amy, 12, and Katie, 9, they are more affectionately known as 3 little monkeys. We live in Auckland and are kept super busy with the 2 older kids going here, there and everywhere, and making sure Katie is happy too. Katie has Batten Disease which is a genetic, fatal, neurodegenerative, totally ugly disease.
How did you get involved with Cure Kids?
In 2012 Katie was diagnosed with Batten Disease. We were contacted by Cure Kids who wanted to make contact as they were funding research into Batten Disease. We were blown away as Batten Disease is a rare disease and knowing that research was being funded in NZ made us super excited. Katie and I had an awesome time on Ticket to Hope and since then we are in constant contact.
What has been the most challenging part of this journey?
Knowing that there is nothing we can do to save our daughter, just watching her slip away from us. It is a rare genetic disease and we had no idea we were carriers. As a parent it is asking the unimaginable, there is only the knowledge that the research is near clinical trial stages so hopefully no other family will have to go on this journey.
How has it impacted your family and life?
On a positive note the 2 older kids seem resilient and compassionate and I have become more tolerant and accepting, and have found a strength I didn’t know existed. I am well aware the crash will come though and that is totally scary.
Your family, and Katie are so brave, how do you stay strong through the toughest of times?
I am grateful that the other 2 kids aren’t affected. I am also glad to be alive everyday because it sure beats not being here.
What is the most important thing for your family?
Keeping Katie comfortable, including her in everything we can, doing all we can to let her know how much she is loved. For me personally it is also extremely important to do all I can to assist the research progress to ensure other children don’t face the devastating circumstances Katie is.
If you could have one wish this Christmas, what would it be?
The research to progress to clinical trials in 2018. And for my beautiful little girl to be happy and with me (2 wishes necessary)
What is one piece of advice you would give to other parents / families going through a similar thing?
Be thankful you have today, ask for help, talk and love.