Did you know every other day in the UK a baby is born who will develop mitochondrial disease?

I will be running for them and the 10 million people in the UK who suffer from diseases in which mitochondrial dysfunction is believed to be involved. This disease is debilitating, there is no cure and lives are cut far too short.

The Lily Foundation's aim is to one day find a cure for mito. As the UK's leading charity dedicated to fighting mitochondrial disease, our mission is to support people whose lives are affected by the condition, raise awareness and fund research into its prevention, diagnosis and treatment.

Please support me and together we will make a difference.

Mya’s Story: A Journey of Love and Bravery

Mya entered the world at just 33 weeks. Diagnosed with Intrauterine Growth Restriction (IUGR), she had stopped growing; my womb was no longer the safe haven she needed. Born via emergency C-section weighing a fragile 1.37kg, she began a life that would become a rollercoaster journey we could never have prepared for.

After seven weeks in the Special Care Baby Unit (SCBU), we finally brought Mya home. However, the joy was clouded by the immense difficulty she had feeding. She would cry out in agonizing pain, leading to several acute hospital admissions that left us searching for answers.

By five months old, the situation turned critical. Mya required ventilation and was blue-lighted by the Children’s Acute Transfer Service (CATS) to Addenbrooke’s PICU, where we very nearly lost our little girl. Eventually, specialists at St Mary’s Hospital discovered she had an "unsafe swallow"—the reason she had been choking and turning blue during feeds. Our path then led us to the Gastroenterology Team at Chelsea and Westminster Hospital, who became a vital pillar of support for our family.

The Reality of Her Condition

By nearly five years old, Mya’s diagnoses were extensive: Mitochondrial Disease, Bulbar Palsy, and Leukodystrophy (White Matter Disease). These resulted in Intestinal Failure, Reflux, and a compromised immune system. To survive, Mya relied on Total Parenteral Nutrition (TPN) delivered via a Hickman line for 18 hours a day, with all other medications administered through a gastrostomy button.

Like many "gastro warriors," Mya battled constant pain, exhaustion, and bloating. Because her condition was cellular—affecting the very way her body functioned—she was ineligible for transplants. We had to face the heartbreaking reality that her condition was life-limiting.

A Family Divided by Illness

Managing Mya’s care was a monumental task for our family. With Mya’s dad working in Afghanistan and Mya frequently hospitalised, her older brother, Sean, often bore the brunt of the upheaval. During one long admission, Sean had to move away to live with relatives and start a new school. As a mother, I felt painfully torn—tending to my daughter’s bedside while my son struggled with the feeling that his family had been taken away from him.

The Final Chapter

From 2014, Mya’s health declined rapidly. The neuropathic pain became unbearable, and her father returned to the UK permanently to be by our side. In 2015, as a last resort, Mya underwent major surgery. It was then that doctors discovered her liver was failing; despite her young age, it was in the condition of a 70-year-old’s.

Kings College Hospital confirmed that a transplant was not an option. We reached the point where no further treatments remained. Our focus shifted entirely to comfort, supported by the incredible True Colours Palliative Care Team and our consultant, Dr. Nik Johnson.

On the 7th of June 2016, our darling princess Mya-Louise lost her fight.

We share Mya’s story to offer an insight into the complex, beautiful, and devastating reality of life with a sick child. Our goal now is to honour her memory by raising funds to support other families walking this difficult path.