Supporting Emma’s Brother Jarrod

Jarrod McKee is 14-year-old brother of very special child Emma McKee.

Jarrod is very protective of his sister Emma, who has Lennox Gastaut Syndrome, a rare form of uncontrolled epilepsy. He finds it extremely difficult to watch his sister struggle with seizures, which can sometimes happen up to 40 times per day.

“It affects me a lot of the time. It’s just a constant worry about when her next seizure will be, and when she does I find it so hard to stand there and watch it, I don’t like that there is nothing I can do to help” said Jarrod.

Jarrod attends Sibling Days and Camps at Very Special Kids, and he finds it really helpful as he doesn’t usually like to share exactly how he is feeling with his friends, “it’s great to be around people who are in the same boat as you, it’s just comforting to know you are not alone” he explained.

Recently Jarrod attended an adolescent camp with Very Special Kids and told the facilitator that “it was one of the greatest experiences of my life. It introduced me to new people I will remember forever and it allowed me to do things I never imagined to be able to.”

Jenny and Rodney McKee, Emma and Jarrod’s parents, are also very grateful that Jarrod can attend these special days and explain that “it’s a great opportunity for him to talk to people in similar situations and also just have a break and get away, we’re so focused on Emma sometimes we might miss certain things with Jarrod, so it’s good for him to go and socialise.”

Jarrod’s parents are also grateful for the break they get with him when Emma stays in our hospice, and explains that “it’s great to be able to take Jarrod on a holiday and do things that normal families might do.”

Although Emma may make life very unique for Jarrod, he is extremely caring and affectionate towards Emma, always keeping an eye on her every move.

“She’s like a cheeky cuddly cat, that’s a complete mixed bag. We often just sit together on the couch and cuddle, because besides that she really can’t do much else” explains Jarrod.

Very Special Kids Sibling Support Program aims to provide a supportive and safe environment where siblings can choose to give voice to their feelings. A therapeutic framework allows children to not only explore their emotions, but also enhances self-esteem, encourages peer support and reduces the sense of isolation often felt.

To help us continue to support siblings like Jarrod, please text ‘PIGGY’ to 0455 021 021 to donate to the Piggy Bank Appeal or you can also donate online here.