About Nina
Nina, whose name has become synonymous with happiness, entered our lives on August 5, 2014. Born prematurely at just 36 weeks due to growth complications, she was immediately rushed to the Neonatal Intensive Care Unit (NICU) upon her arrival. For two long weeks, we watched as our little fighter battled to gain strength, hoping for the moment when we could finally bring her home to complete our family of four.
As the months passed, we began to notice that Nina wasn’t achieving the typical milestones that most babies do. Concerned, we sought a second opinion from a health visitor when she was just five months old. The initial assessment suggested that Nina might be allergic to my milk, prompting us to book an appointment with our general practitioner. This set off a chain of referrals to medical professionals leading to numerous tests and evaluations.
Ultimately, we were faced with the reality that Nina has an exceptionally rare genetic condition, so unique that it lacks a specific name and sufficient data to predict future outcomes. Despite the challenges, Nina has amazed us all by surpassing doctors’ expectations over the past ten years. Her journey has been supported by both NHS professionals and private therapists, which have made a significant difference in her development.
As parents, we deeply understand the loneliness and difficulty that accompany navigating the complex landscape of caring for a child with special needs. To ensure that all children in our community have access to the resources they need to reach their full potential, we have chosen to establish a foundation in Nina’s name.
Goals
Our foundation has several key goals to support children and young people with disabilities and their families:
- We aim to provide support to children and young people with disabilities, ensuring they have access to the resources, services, and interventions they need to thrive.
- We recognise that parents play a crucial role in their child’s development. We strive to empower parents by providing them with guidance, information, and support as they navigate through the various services and stages of their child’s development.
- We understand that each child is unique and may have specific needs and challenges. Our Foundation is committed to providing support and interventions to meet the specific needs of each child. Through interventions, we aim to address their strengths and challenges effectively, promoting their overall well-being and development.
- We believe in the importance of strong family connections and community involvement. Our foundation works towards creating a supportive community where families feel included, valued, and supported
- We understand that specialised equipment can greatly enhance a child’s abilities and quality of life. Our foundation strives to provide children with disabilities access to the specialist equipment. We work closely with healthcare professionals and experts to identify the needs of each child.
These goals drive our efforts to create a nurturing and inclusive environment where children with disabilities can thrive, parents can receive the support they need, and families can be active participants in their child’s development and the community.
Ninas Foundation 