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The McKee family is the face of this year’s Piggy Bank Appeal, and receive many different services from Very Special Kids. Jenny and Rodney, are parents to 14-year-old Jarrod, and 10-year-old Emma who suffers from Lennox Gastaut Syndrome, a rare form of uncontrolled epilepsy.

Since Emma’s birth and then diagnosis at just seven weeks of age, the McKee’s have had to completely change their lives.

Jenny and Rodney receive emotional support and guidance from Very Special Kids, with a counsellor regularly checking in, as well as attending coffee days and parent bonding activities.

Having a child with a complex medical condition has many challenges, but the McKee’s find the most challenging part of Emma’s condition the uncertainty.

“If we could stop the seizures that would be my wish, they’re uncontrollable and to see what she goes through while not being able to do anything about it, is awful. Every time she has a seizure it’s doing damage to her brain but no one can tell us exactly how. It is like living in an unknown world” said Rodney.

Very Special Kids provides a range of support services to the McKee family, and they know that when Emma comes to stay at our children’s hospice, she is safe and in good hands, giving them time for activities and much needed respite several times a year.

“The hospice provides us with a break, it’s not just a babysitting service, it’s real and it’s nice to know there is a professional service there.

In the early years I never felt like I could leave her, but we finally realised we cannot do it all alone. Now Emma loves the hospice and we feel comfortable leaving her there, knowing she is safe and with good people” said Jenny.

The McKee family is exceptionally grateful for everyday they have with Emma, as well as Very Special Kids and the support provided to their entire family, as Jenny explained “it is an incredible privilege to have this service available, it really is special.”

To help Very Special Kids support families like the McKee’s please donate to the Piggy Bank Appeal here.


Categories: Piggy Bank Appeal News

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