Help Us Support 14 Month Old Maeve & Her Family.

CLARENCE TOWN CHRISTMAS LIGHTS - PROUDLY RAISING FUNDS FOR THOSE WHO NEED IT MOST .

Please Help Us Support 14 Month Old Maeve and Her Family.

Maeve is a beautiful, strong, and resilient 14-month-old little girl who has been navigating a complex medical journey.

Maeve was born with severe hydrocephalus, necessitating brain surgery at just four days old to place a VP Shunt. She spent her first month in the NICU. Hydrocephalus is a condition that causes a build-up of fluid in the brain's cavities, putting pressure on the brain and potentially causing damage. Maeve will require the VP Shunt for the rest of her life and will need multiple surgeries to replace it when it malfunctions.

At two months old, Maeve began experiencing respiratory problems, leading to her being rushed to intensive care and placed on a ventilator during Christmas 2023. Despite doctors' concerns, Maeve pulled through and underwent further investigations. She has had her airways examined three times and a sleep study revealed severe central and obstructive sleep apnoea. As a result, Maeve requires oxygen while she sleeps. She also has laryngomalacia (floppy vocal folds) and tracheomalacia (airway collapse when breathing).

When Maeve was seven months old, she was diagnosed with Craniosynostosis, a condition where one or more sutures in an infant's skull prematurely fuse, altering skull growth and potentially affecting brain development. While major skull reconstructive surgery was initially planned, her craniofacial team recently advised that the surgery is too risky at this stage, so it has been postponed. Maeve will be closely monitored for any changes in her condition.

Maeve's medical issues significantly impact her feeding and nutrition. She lacks the feeding skills and nutritional intake typical for her age and cannot safely maintain adequate oral intake for growth and sustenance. Consequently, she has a nasogastric tube for feeding, which is expected to be a long-term requirement. She is awaiting an appointment with the surgical team to discuss the placement of a PEG/gastrostomy button for long-term feeding. The excess cerebrospinal fluid from her hydrocephalus causes persistent vomiting, poor feeding, confusion, cognitive problems, and feed intolerance.

Additionally, Maeve has been assessed as having severe Global Developmental Delay in all areas, including gross motor, fine motor, communication, play, and social skills. She requires extensive multidisciplinary therapy to support her development and potential.

Maeve lives with her supportive and dedicated mother, Taylah, and is also supported by extended family.

Despite Maeve's tough start to life and the challenges she is faced with every day, she is the happiest baby with the biggest personality

Thank you for taking the time to read about Maeve's journey. Your support and understanding mean the world to us.

Best regards,

Taylah