Hi, I’m Alex. A sister, a daughter, a cousin and someone who wants to raise more awareness for unknown medical conditions.

On the 21st September 2024, I will be taking part in a 150ft abseil down the Liverpool Anglican Cathedral in aid of raising money for Alder Hey’s Children’s Charity, as a thank you for what they do for the many children with rare conditions, such as Daniel and Olivia.

The Charity helps thousands of children, and their families, every year with their amazing expertise and services whilst having many specialist areas allowing them to help so many children from all over!

CRMO, Chronic Recurrent Multifocal Osteomyelitis. Daniel was diagnosed with this in 2020. Daniel was sent into hospital with a limp, however that limp was actually due to CRMO. CRMO is the immune system attacking the bones and causing inflammation, although there is no infection, which can lead to severe discomfort. The condition occurs in 1 in a million people and it happened to Daniel. He is currently in a period of remission however he still suffers after long walks or days where he has done more activity than usual.

Olivia was diagnosed with Childhood Nephrotic Syndrome on 26th September 2023. Nephrotic syndrome is a condition that causes the kidneys to leak large amounts of protein into the urine. This can lead to a range of problems, including swelling of body tissues. Unfortunately, due to an extremely, extremely rare side effect of the condition, Olivia died on the 23rd November 2023, due to a catastrophic bleed on the brain. She was two years old.