Ada and her family’s journey of resilience despite facing a rare disease is truly heart- warming. Their support for The Children’s Appeal at the upcoming Santa Fun Run and your donations will ensure that children like Ada and future children in our care can benefit from improved facilities and equipment for many years to come.

In December 2021, Ada Rose Iris Brame was born at Ipswich Hospital, bringing immense joy to her parents, Helen Crozier and Gary Brame and big sister Frankie. Their happiness soon turned into concern when Ada's health took a sudden turn for the worse. 

One morning Ada's parents noticed a significant change in her health. She struggled to sit up, eat, and became excessively tired. Alarmed by these symptoms, Ada's family did as any parents would do and took her to their GP. After several hospital stays and investigations, Ada was diagnosed with Aicardi-Goutirès Syndrome, a rare genetic mutation disease that primarily affects the brain, immune system, and skin. 

Despite her condition, Ada continues to fight with unwavering determination. She enjoys playing with bubbles and sensory equipment, which have become an important part of her care.

Throughout this challenging time, Ada's extended family has been a pillar of support “I couldn’t have done it without them”, said Helen. Ada's one-year-old brother, Reggie, has constantly been by her side and captured the hearts of the Children's Department team.

Helen explained her “relief” upon receiving Ada's diagnosis, as it provided clarity about her condition. Additionally, knowing that Reggie will now be tested for the condition brought comfort to the family.

Helen extends her heartfelt gratitude to the nurses and Dr. Lauren Filby for their incredible care, not only for Ada but also for her as a mother. They have shown a great deal of understanding of the importance of her well-being and provides support in various ways, from offering cuddles for Ada, to allow Helen some time for herself and a shoulder to cry on.

As work continues to transform the ward, Helen describes the medical staff as "absolutely amazing" and appreciates their support despite the difficult working conditions.

In recognition of the exceptional care and hard work of the Ipswich Children's Department, Ada's family members are participating in the Santa Fun Run on Sunday 3 December. Their fundraising efforts, currently standing at an incredible £3,315, will contribute to the Children's Department's ongoing transformation and help fund indoor and outdoor sensory and play equipment to reduce anxiety and create calming spaces to aide recovery. 

Ada's army, as her family fondly refers to themselves, is thrilled that their fundraising efforts will contribute to the Children's Department's goal of providing enhanced sensory and play equipment for children like Ada to enjoy long into the future.

To sponsor Ada's Army, click here to visit JustGiving

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