Veronica Antonietta Marino
Veronica Antonietta Marino was born on the third of July, 2009 on a crisp mid-winter day, as a perfectly healthy little baby. At 3 months of age we began to see signs of abnormality. She did not seem to see, move, or respond like other babies. At 4 months of age, Veronica began to have staring moments and sharp jerking movements. Some doctors dismissed them as an ordinary startle reflex or extreme startle reflex. The number of jerks slowly increased and began to cluster in threes and fours. After an E.E.G. she was diagnosed with epilepsy. At 6 months of age she was diagnosed with CDG-1 (her subtype continues to be investigated). At this point, all our lives changed.
Veronica suffered daily from many, many seizures. At times 30 or more myoclonic jerks per day. After starting seizure medication they changed into multiple tonic apnea seizures per day. We trialed numerous medications to control her seizures, none were completely effective. Although she struggled with seizures, she still managed to drink well and eat solid food very well. She loved fruit and especially bananas. She learnt to tell us she was hungry by opening and closing her mouth and later on she would say “um” for yum. She never cooed like a baby, but made plenty of her own sounds. This was music to our ears. Veronica learnt to roll from her side to her back and most proudly learnt to push up with her hands and roll from her tummy onto her back. She was incredible to watch. Her determination was amazing. She would smile with Nonna’s songs and when trotting about the house with dad. Veronica also loved the sensation of the wind caressing her face. She would listen with such enthusiasm to books read and music. Sadly her smiles only occurred when she had good seizure control and these times were rare.
Just after her first birthday she caught a number of common viruses. Each time she was unwell, her seizures increased in quantity and in the end they were uncontrollable. Veronica passed away in our arms on the September 22, 2010 at 14 ½ months of age.
Veronica is now in heaven with the other little angels. We love her and miss her so dearly. We had some wonderful times with her and each day with her was such a gift. She was a very strong and courageous little girl. Veronica changed many lives, especially us, her parents.
Marc and Carissa Marino
Melbourne, Australia
If anybody would like to know more detailed information please contact us at carissa__@hotmail.com.
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