The Halfpennys – Wayne, Emma, Jessika and Jakob, were the first family to stay at the Beach House.
Jessika said, “I like the Beach House because my brother and I get to play outside in the cubby house. It is nice to relax and play with my family.”
Jessika has skin so delicate she is one of a small number of children to be dubbed a ‘butterfly child’. Her condition, Epidermolysis Bullosa, causes debilitating blisters across her whole body and means she will spend the rest of her life in bandages. It also affects her ability to eat and puts her at high risk of aspiration and choking. She also has Limb Girdle Muscular Dystrophy and requires the use of a wheelchair. She is under the care of the Complex Care Service at the Women’s and Children’s Hospital.
Often something that should be filled with excitement, such as taking a family holiday, instead brings stress and complications for the Halfpennys.
“We spend a lot of time away from home but never a holiday as it’s hard for us to go anywhere or take Jessika places because we have to pack a substantial amount of equipment,” Wayne said.
“The Beach House is so well configured and equipped that Jessika gained a new level of independence. The wheelchair accessible cubby house was the highlight for Jessika and Jakob. To watch them play happily together in the cubby brought Emma and I so much joy.”
Along with enjoying spending time in the Beach House, the Halfpennys ventured to different parts of the Fleurieu including the Horse Drawn Tram.
Jessika was first diagnosed with the conditions as a baby and has never known life any other way.
“My skin is like tissue paper, if you touch or bump me, I will rip my skin and it’s really painful. You have to be very careful around me,” Jessika said.
Jessika starts her day around 7am with her parents, Emma and Wayne, carefully checking her dressings and looking for signs of any new blisters. It can take almost two hours to get her ready for school. During her school day her carers also check for new sores. With Jessika tiring easily, her parents pick her up early and continue her care at home with pain relief, and a medicated bath and re-dressings to help control skin infection. This treatment can take Emma and Wayne up to three hours.
“As a mother, your heart breaks. You see her in a lot of pain, and you wish you could transfer that pain onto yourself, so she wouldn’t have to suffer,” Emma said.