Every family has fond memories of family holidays. But imagine if your child was so sick that taking a holiday was simply out of reach.
Nine-year-old Jessika Halfpenny 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. Jessika’s condition is also internal, affecting her ability to eat and putting her at high risk of aspiration and choking. Because of this she is fed a special formula directly into her stomach through a feeding tube.
She also has Limb Girdle Muscular Dystrophy and requires the use of a wheelchair.
“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 says.
Jessika was first diagnosed with the conditions as a baby and has never known life any other way.
For Jessika and her family every day is full of challenges most of us could not comprehend.
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 says.
Emma, Wayne, Jessika and her little brother Jakob, aged 5, regularly travel the near 10-hour round trip from Mildura to Adelaide to visit the Women’s and Children’s Hospital staying in Adelaide for days or weeks at a time. In 2018 they made this trip 14 times. The trips are unpredictable with a stay scheduled for only a few days often turning into weeks.
Life is not easy for butterfly children and their families. Often something that should be filled with excitement, such as taking a family holiday, instead brings stress and complications.
“We don’t really get to go on holidays because of me. We have to pack like 1000 things. It’s really hard,” Jessika says.
It is for families like the Halfpennys that the Women’s & Children’s Hospital Foundation built the Beach House. Located at Encounter Lakes, Victor Harbor, this extraordinary facility is South Australia’s first purpose-built holiday home for families caring around-the-clock for a child with complex medical needs.
The home has been specifically designed, constructed and medically equipped to meet the needs of children with complex medical needs or in palliative care, while the beautiful interiors, landscaping and sweeping views of the lake create a sense of calm and wellness.
The Beach House can sleep up to 12 people allowing immediate and extended family, as well as friends to stay, so everyone can experience this special time together.
Click on the rooms below and take a look inside
The Beach House is a very special place for the whole family where they can enjoy a seaside escape and rest, connect and create wonderful memories together.
“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 says.
“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.”
Officially opened in July 2019, the WCH Foundation Beach House is South Australia’s first purpose-built holiday home for families who have a child receiving care through the Palliative Care Service or Complex Care Unit at the Women’s and Children’s Hospital.
The great Australian family getaway is at the beach and thanks to the Beach House the opportunity to experience this quintessential holiday is now possible for these families.
Families’ stays are solely funded by donations made to the WCH Foundation.
We work closely with the families to help create bespoke holidays to meet their wishes and needs, whether it is enjoying experiences in the local Victor Harbor area or a professional photography session to capture the special moments. We also respect and understand that relaxing and spending quiet time together may be the priority and focus for families – the Beach House provides the perfect setting.
The WCH Foundation is committed to ensuring that the Beach House continues to be a sanctuary for families for decades to come.
To do this, we need your help. The Beach House receives no government funding and therefore we rely on the support of the wonderful community, support from people just like you.
Your support will contribute to ensuring families – just like Jessika’s – can stay at the Beach House and create wonderful memories together that will last a lifetime.
Please consider making a tax-deductible donation today.