Family Support Update August 2016

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Family Support Update August 2016

The DEBRA Family Support Committee and EB Nurse in Melbourne have been extremely busy over the past 3 months supporting 2 new families who have recently become part of the EB community. Welcome gorgeous Gabriel and Charlotte along with parents Martina, Jess and Shane. Gabriel is 12 weeks old, Charlotte is 6 weeks old and both were born with different types of EB.

Our EB Nurse Lauren Weston from the Royal Children’s Hospital of Melbourne along with Simone and the DEBRA Family Support committee have been providing invaluable care and support to families to ensure adequate EB care is provided. The Family Support Program has recently funded a suitable bath for Gabriel which will provide a suitable setup for his wound care. Both Gabriel and Charlotte are as cute as can be & we look forward to watching them grow into gorgeous young children.

Martina and Gabriel

Shane, Charlotte and Jess

The Family Support program has also recently supported Otto with the purchase of a laptop to support him with his school work which he struggles with due to on-going battles with blisters on his hands and fingers.

Otto with his mother Nina attending the EB Clinic in Melbourne

Poem for Eliza

Two years ago, one of our bravest EB babies Eliza Braitling passed away from JEB. Her mother Silke Raetze has since written a beautiful poem & is happy for us to share it with our members. It demonstrates the most difficult journey & battle anyone could possibly ever face and can be read online here.

I_Had_a_Baby

Click here to read Silke’s Poem.

If you have any enquiries about the Family Support program, carer respite and sibling support please contact our Family Support Co-ordinator, Simone 0413 967 609 or via email ebfamilysupport@debra.org.au

2017-10-09T20:08:05+00:00 August 16th, 2016|News|1 Comment

One Comment

  1. Pat & Ken Oxford August 20, 2016 at 2:09 pm - Reply

    It is lovely to see photos of EB children & Families the support from Debra is great our granddaughter Bianca Saunders & her mum & Dad & all their friends & Family are the most wonderful support that anyone could have. Simone & family are also fabulous As grandparents we miss seeing families like we used to (Christmas Party with Santa etc. but Debra Australia are all doing a wonderful job. Never think that you are on your own because there is others who do understand & have been through a lot that can help. Love always Pat & Ken Oxford.

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