Recently 10 mums of severe EB children attended DEBRA’s annual respite weekend away. The weather was beautiful and the ladies thoroughly enjoyed each other’s company. There was a mixture of activities including home catered meals, restaurant dining, yoga, relaxation massages, sunrise horse riding, shopping, wandering through markets, walking along the beach, sleep ins and general relaxation. There were lots of laughs (and a few tears) and the mums all agreed it was the best respite to date. They all left Byron Bay feeling refreshed, stronger and ready to face the next part of their journey with EB. DEBRA and our mums are most grateful to our very generous sponsors who make this escape possible – thank you Byron Luxury Beach Houses! For some of our mums this trip away is the only opportunity to have some quality free time and they look forward to it all year.
The mums were surveyed after the weekend and had this to say:
“I had a wonderful break away from caring for my son. I don’t really get much time out so this was really special for me. I felt very pampered. Thank you.”
“it was great to be with an amazing group of women that have been through EB or going through it. I don't think I have laughed so much. Just to be able to go for a walk or have a cuppa with someone. To be really honest I did not have to worry about bath and dressings for 5 days. I had the whole day for me. Thank you very much DEBRA for giving me the break. I am really grateful. Thanks is not enough but THANKS.”
“It's a great opportunity to spend time with other EB mums who have an understanding of what it's like living with the condition. There's no pressure or expectation from anyone because we all share the same journey. The trip was a great opportunity to get away from it all and switch off.”
The Family Support Program has been busy supporting many families with various needs over the past few months. Little Alisha has recently had a rough trot in ICU but is home with her family now after a long admission in hospital. We also recently caught up with many families during an EB clinic in Adelaide. If you have any queries and need help with family support matters please contact Simone Baird on 0413 967 609 or firstname.lastname@example.org