Dannielle & Marnie

Hi, my name is Dannielle and I have 4 beautiful and individual girls. Marnie is 17, Caitlyn is 14, Paige is 10 and Olivia is 7. My eldest daughter, Marnie, has CCMV. When I was pregnant I was living with my aunty who had a newborn baby whom I adored and did everything for as when he was 2 months old my aunty found out she was pregnant again. So, I took my cousin everywhere, even with my big belly…LOL. Whilst I was pregnant I had what I thought was the flu. The doctors told me I had pneumonia and gave me penicillin shots every day to help clear it up. On the 4th of September 1994 (Fathers day never the less) at 10.40pm I gave birth to the most amazing little girl…

When Marnie was 6 weeks old I dropped some pans. My brother was sitting with Marnie and said to me she didn’t hear you, she didn’t move at all…. At the time I got very defensive. After seeing the Doctor Marn failed her first hearing test so off we went to get grommets put in. By the time she had them put in she was 12 months old and I started to notice other problems such as she couldn’t eat food without choking. Eventually we got sent to the RCH in Melbourne and after a few tests they told me she had hearing problems a cleft palette and visual problems So we got sent to the eye and ear hospital to see if she could be fitted with a cochlear implant… Off we then went to Monash to have a MRI done… When we went back to Monash for the results I found out there were a lot more problems than originally thought Marnie had a Bifod Uvula, Bifod brain stem, Cleft Palette, Deafness, Partial Blindness and her 6th to 12th cranial nerve had been affected….At the same time I had found out that I was pregnant so I asked my neurologist what the odds where with this baby…… But on the good note she could be implanted but we had to have testing at the RCH to find out which syndrome and problems she had… Our awesome paediatrician came back to tell me that Marnie had CCMV and so did I……. The doctors also told me Marn has moebius syndrome which gives her no muscles or limited muscles in her face no neck muscles very little eye movement deafness and most of all her other issues……Most of her teeth had to be surgically removed as her jaw was to little too.

My second daughter was born in May 1997 and by October 1998 Marnie was finally implanted. Once the operation was done the Doctor came to tell me they had gone to cut what they had thought was infected tissue away but it happened to be her facial nerve. So happy they didn’t cut it completely. She also had brain fluid leakage and spinal fluid leakage!! Then they started trialling bilateral implantation which Marnie participated in but now refuses to wear her second implant as she doesn’t like the noise. Within 12 months of the second implant Marnie’s first implant didn’t work properly. The doctors kept telling me it was fine but I persisted and eventually we went in the special egg and I was told Marnie’s implant had eroded inside her head and she would need re implanting … OMG!!!

All my other children have been tested and there is no traces in them. Not that it would matter to me if there was.

Now back to my teenager. Over the last few years she has grown into a lovely young woman. At sometimes she lacks confidence and self esteem and at times has cut herself to make herself feel better. She often used to tell me she hated her face and her eyes as she has lack of eye movement. I wouldn’t change her for the world. She is a blessing sent to me. She amazes me everyday with her strength and ability to accept anything no matter how much it hurts her. At the end of it, yes she has had a lot of issues but she is a remarkable young lady that I adore and worship everyday.

Shared by her mother, Dannielle