DEBRA Qld News - October 2011

Want to help?

If you'd like to donate to DEBRA's QLD branch to specifically help those in QLD who are living with EB, please contact Kathy on 07 4634 4912 or Sue on 07 4693 7003. Your generosity is greatly appreciated!

Era of a New Dawn

It is with a great deal of excitement that I report to everyone that DEBRA QLD is moving forward to come under the banner of the new National DEBRA Ltd which is now being established. This will save on the doubling up of paperwork and increase our combined resources to be more beneficial for members on a national basis. DEBRA Australia, along with State organisations, has worked hard over the years to increase EB Services and with the EB Dressing Scheme and the new National EB Nurse Program we
are well underway to achieving our united goals. I would like to take this opportunity to thank our valued supporters over the years and to put their minds at ease that they can still support and donate to DEBRA Ltd, knowing that the QLD families will continue to receive the help they need. The priority of all of DEBRA is to support those in need
wherever they are.

Thank you especially to the volunteers of DEBRA QLD and to our lovely supporters, we wouldn’t have achieved what we have over the years without you all. We look forward to working with DEBRA Australia and our supporters in the future to continue striving for improved EB Services, a better quality of life for our members and ultimately one day a cure.

Kathy Hagan
DEBRA QLD President

Our Beautiful Renae

On the 30th August 1994 our first child came into our world, and straight into ICU. Renae was born without skin on most areas of her arms and legs; some patches missing from her tiny bottom and from her baldy scalp. My obstetrician did not think she would survive. Treatments, bandages and splints were expertly applied by the Burns Unit at Royal Children’s Hospital, and while Renae cried in pain I would sob. After three days they told us Renae’s white blood cell count had dropped dramatically and she was open to infection. Our Renae never gave up; her dad never gave up on her either, sitting and talking to her most of the time. At 10 days old, Renae was diagnosed with Epidermolysis Bullosa Simplex (further diagnosis three years later, Dowling Meara – Köbner). It not only took a few attempts to get our tongue around the diagnosis but also our head around how this happened. Genetic counselling offered up a few answers; her condition was dominant; a “fresh gene mutation”, a 1-in-360,000 chance. Having our beautiful new daughter referred to as a “fresh mutation” did not rest well, my thoughts drifting off to the ridiculous – Teenage Mutant Ninja Turtles and mutant comic book
heroes, but our daughter was neither green nor deformed.

For some months Blue Nurses called on us 3 times a week but in the end I was telling them what to do, and by the age of 2 Renae was telling us what to do. In the early  days we were told she may need a wheelchair to prevent injuring her feet – I was a mother obsessed with the overwhelming thought my daughter will never dance. Scarring caused at birth was a major drawback, especially for a girl; new shoes always caused devastation to her feet and then there was the devastation caused by the insensitive boy on the school bus who made fun of her thinning hair.

Despite the sad, disheartening prognosis and the bad manners of some kids and medical professionals alike, Renae has grown into a beautiful, kind and compassionate 17 year old, who has her first boyfriend, a wonderful circle of friends and is such an expert at applying make-up that friends “book her” when they have a special occasion.

And now to today, 30th August 2011, Renae is sitting the Year 12 Queensland Core Skills exams on her birthday! She attended a dance last Saturday night, she gets spray tans to cover scars and always looks like the fashion diva in scarves and head bands to cover her scalp. Seventeen years ago it was hard to imagine this day, and despite the occasional tears, Renae is resilient and has overcome the blisters and the “why me’s”, and we are so very proud of her.

Kim Horwood

Thank you to our Generous Donors

DEBRA Qld would like to thank the following donors for their generosity and continuing support from March 2011 –
August 2011.

Organisations

Worthy Matron & Worthy Patron
Morayfield Lioness Club
Redcliffe Chapter No.85 Order of the Eastern Star

Individuals

Helene Grayson & Russell Short
Kathy & David Hagan
Mrs Tauber
Susan & George Meehan

Thank you to the members who have renewed their memberships and also made a donation, your support is
very much appreciated.