On the 22nd November 2019, our beautiful baby girl Rosie was born. The love and protection that we felt for our little girl was enormous and whereas most mums and dads are able to enjoy the bubble of having a newborn baby, unfortunately ours was a lot more traumatic than this. Rosie was admitted into the Royal Gwent NICU due to poor feeding and here we began a long journey of searching for answers.

After various tests and scans (and 9 weeks in NICU), Rosie was diagnosed with probable Moebius syndrome - something we had never heard of before. Moebius syndrome is a rare neurological condition which affects the facial nerves and essentially results in paralysis or weakening of the facial muscles. Moebius syndrome is so rare that statistics shows it impacts 2 in 1,000,000 babies! Many doctors and nurses are not even aware of the syndrome! The disorder is present at birth and so we were unaware of any ‘abnormalities’ during pregnancy. Moebius syndrome is commonly associated with the inability to make facial expressions, blink and move the eyes laterally. Many individuals with Moebius Syndrome can also carry other abnormalities such as underdevelopment of muscles and defects of the limbs. Moebius syndrome is not progressive and the exact cause is unknown.

As Rosie’s parents, we were initially petrified of what this meant for our baby. We were scared of what the future held for Rosie and the love and protection that any parent feels when their baby is born had become so much more intense as we now felt like we needed to protect our little girl from the scary world that we live in. 

Rosie is now 14 months old and what a journey we have already been on. Although we may not see her smile, she is the happiest and craziest baby and we couldn’t be any more proud of her if we tried. She has overcome so many obstacles in these 14 months and has shown us so much strength for such a little girl. She has taught us how to love in ways that we didn’t even know were possible before and she doesn’t even know it! 

As a family, we will be doing a variety of COVID safe fundraising attempts to raise money for Moebius Research Trust and most importantly to raise awareness of Moebius Syndrome. If we can help educate others, hopefully we can help others to “look beyond face value” - one of the most important slogans for Moebius Syndrome. 

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