Aria’s Battle with Edward Syndrome

Aria Markward was born on December 6 2024, and shortly after her arrival, she was diagnosed with full Trisomy 18, also known as Edward syndrome. This genetic disorder occurs when there's an extra copy of chromosome 18, leading to significant developmental delays and various medical complications. Sadly, the prognosis for infants with Edward syndrome is often grim, with many not surviving beyond their first year.

As you can imagine, this diagnosis has presented Aria's family with immense challenges and a difficult journey to navigate. Aria requires frequent medical appointments to ensure her healthcare needs are met. She is fed through a feeding tube because she struggles to bottle-feed due to a lack of suction. There have been times when Aria has experienced apnoeic episodes, where her breathing dramatically slows or even stops, causing understandable fear and worry for her parents.

Aria also battles a heart condition, which further complicates her chances of reaching her first birthday. As she grows, her heart will have to work harder, adding strain and making her condition even more challenging. Despite these obstacles, Aria is a fighter and recently celebrated her 6-month birthday—a significant milestone!

Currently, Aria is receiving palliative care at a Robin House Children’s Hospice, where she is surrounded by her loving parents. With both parents unable to return to work due to Aria’s condition, they face daily financial struggles. Dealing with a terminally ill baby is already an unimaginable burden, and financial worries should be the last thing on their minds. This situation has forced Aria’s dad, Leo, to return to work, taking him away from precious moments with Aria, when her survival rate to age 1 is only around 10%.

If you can find it in your heart to donate even a small amount, like £1, it would be deeply appreciated by the family and would make a significant impact on Aria’s quality of life during this precious time.