Lilly May Rhodes was born on 19 August 2007

She had a traumatic birth and was 5 weeks premature,

We were told due to a lack of oxygen there may be complications or maybe not only time would tell,

As the toddler stage approached, we clearly knew there were issues with her development not crawling properly, walking and talking.

We were told it was cerebral palsy, so we accepted this diagnosis and moved on.

Later on, Lilly developed dystonia and scoliosis, which became painful and uncomfortable for her so after much deliberation we decided to go ahead with the surgery, she never recovered after the procedure, and it certainly didn’t make her life any easier or more comfortable.

Shortly after this aged 16 we had the devastating news she had a mitochondria wars2 gene disorder; we were told it was typical of a child with mitochondrial to react badly to surgery.

After this she became increasingly more tired and then developed issues with her gut.

We took her into hospital on the 1st of August and she never came home.

The Mito had taken over, she had her 17th birthday on PICU at the Birmingham children's hospital and passed away 10 days later on the 29/08/2024 at Acorns Hospice in Walsall.

Lilly was the happiest girl in the world despite all her obstacles and struggles.

She laughed every day

She had the best smile and was the strongest bravest person we've ever known, and she fought till the end.

We love and miss you so much.

In her memory we want to make a difference to all those affected by mitochondrial disease. We want to fund research and support families like ours.

Help us make a legacy for Lilly May by donating to The Lily Foundation or take on your own challenge because of Lilly to change the future for others.

Thank you

Love Rob,Kerry and Charlie (brother)