In May 2019, we celebrated the birth of our 7th baby, our precious Clementine (Coco). Coco arrived 5 weeks early via C-section, due to IUGR.

 

Coco spent 3 days in special care, and as she was doing so well, was released from the hospital when she was 5 days old. She was our first baby to experience feeding difficulties and needed to be bottle fed and given medication for colic and reflux.

 

Coco was sleeping through the night by her due date and was thriving physically, mentally and emotionally. She met all of her milestones and in fact she was ahead in most. She was a little slower to sit and crawl, however we were told that was to be expected due to her premature birth.

 

As we drew closer to celebrating our beautiful girl’s first birthday, she spent her days playing, constantly saying her nine very clear words, dancing, waving and clapping her hands. She also had quite advanced comprehension. We were so blissfully unaware of the challenges that were ahead.

 

When Coco was almost 13 months old, she had a seizure that changed her world and ours. We spent 3 nights in hospital, she had an MRI, Lumbar puncture and limited genetic testing. All of her results were clear. We were released from hospital and told that she may have had a virus.

 

Within a month Coco endured another seizure, this time with devastating consequences. From then on, each week to two weeks she continued having seizures. Coco was diagnosed with cerebral palsy and then epilepsy. Due to her frequent uncontrolled seizures, her neurologist ordered advanced genetic testing for Coco. In early January 2021, when she was 19 months old, we received Coco’s results. Coco was diagnosed with GRIN2D. We were completely and utterly devastated.

 

With such limited information in Australia, we contacted Cure GRIN Foundation and have now been in contact with other families dealing with GRIN disorder. Their advice, knowledge and support is invaluable and it has really helped us feel less powerless, in dealing with Coco’s health being so medically complex.

 

We now feel that we have a responsibility to do what we can, along with our new found community, to help find a cure for GRIN.

 

This is not the life we expected for Coco or our family, however our love for her is infinite and the joy and happiness she brings to our family is immeasurable. Our lives have become much more intentional now and focused on Coco living her very best life.