Family Faces Overwhelming Health Battles with Daughter's Rare Condition and Father's Heart Surgery
A mother from Hampshire has opened up about the immense challenges her family is enduring, as her young daughter suffers from a rare genetic disorder causing hundreds of seizures daily, compounded by her husband's recent emergency heart surgery. Alexandra Bufton, 37, and her husband Kris, 40, are navigating this dual health crisis while caring for their three children, including six-year-old Doris, who requires full-time palliative care.
Doris's Diagnosis and Daily Struggles
Doris was born in September 2019, weighing just 3lb 9oz after a premature delivery at 34 weeks. Initially, her parents noticed developmental delays, such as excessive sleeping and difficulty holding up her head, which they attributed to her early arrival. However, in April 2020, after being hospitalised with a fever and head swelling, Doris was diagnosed with a rare 17p13.3 microdeletion and lissencephaly, meaning she has a smooth brain. This condition has led to severe limitations, with doctors informing the family that Doris is unlikely to survive beyond age 10 and will never sit, walk, or speak, functioning mentally at around a one-year-old level.
Now aged six, Doris's health has deteriorated significantly. She experiences between 300 and 500 seizures each day, is asleep for approximately 23 hours, and can no longer smile or lift her head. She relies on a gastrostomy tube for feeding and requires extensive equipment, including a specialist bath, ceiling-track hoists, a padded bed, a wheelchair, and a standing frame. In May 2025, a device was implanted in her chest to send electrical pulses to her brain via the vagus nerve, aiming to reduce seizure frequency, but control remains elusive. Alexandra, who has become Doris's full-time carer, emphasises that their focus is on her quality of life, managing her comfort and happiness through palliative care.
Kris's Sudden Heart Condition and Surgery
Adding to the family's stress, Kris, a self-employed builder, was recently diagnosed with a heart condition. After discovering high blood pressure years ago, scans in December 2025 revealed he had a bicuspid aortic valve, an aortic aneurysm, a heart murmur, and a leaky valve, necessitating valve replacement surgery. Following chest pains, he underwent emergency open heart surgery on January 15, 2026. The procedure went well, but Kris faced complications including a partially collapsed lung, requiring a chest tube and drains. He is expected to need at least six months off work to recover, creating financial strain as he is the sole earner while Alexandra cares for Doris.
Financial Hardships and Fundraising Efforts
With Kris unable to work and Alexandra dedicated to Doris's care, the family from Locks Heath, Hampshire, has launched a GoFundMe campaign to stay afloat. They have already raised over £10,500, but Alexandra has taken steps like cancelling Sky TV and installing smart meters to manage expenses. She describes the emotional toll, often pretending everything is okay and using humour to cope, while only allowing herself to cry in private. The family is taking each day as it comes, hoping for more time with Doris and a smooth recovery for Kris.
Alexandra, who also has two other daughters, Amelia, 14, and Poppy, nine, reflects on their resilience, stating that moping won't change their situation. They remain hopeful, focusing on Doris's comfort and Kris's healing, as they navigate this incredibly difficult period together.
