Crescent Kids started when Funmi Vanessa Ulam’s baby, just two weeks old, was diagnosed with Sickle Cell Disease. This serious blood disorder impacts people in different ways. In severe cases, it can be fatal. Funmi admits she didn’t know much about the condition until her family faced it, at which point she was thrown in at the deep end. While her son was in hospital for Sickle Cell crises, she met with medical teams and consultants. These crises are painful and can cause serious complications. She found out through her research and talks at the hospital that Sickle Cell is one of the fastest-growing genetic conditions worldwide, it has fewer resources and funds for research than other conditions. Health equity issues make this worse. Most people with Sickle Cell are black & brown-skinned.
Finding treatments, communities and vital resources for families is often challenging. Most details aren’t gathered in one place. With a better understanding of the condition and the lack of resources for families, Funmi set up Crescent Kids.
It wasn’t until the Covid pandemic however, that the organisation really got off the ground. Funmi registered with the Charity Commission. But, starting a charity alone and without funding can be a long, lonely journey, especially when looking after a child with complex medical needs. Funmi says she didn’t know where to start. The pandemic changed everything, though. Funmi vividly recalled her time in and out of hospital with her son, and this made her think of parents now facing tough decisions about taking their children to the hospital. To add to this, Funmi’s regular hospital was closed, so, they had to visit a new place. The staff there were unfamiliar and didn’t know hers son’s clinical history. Caring for a child with Sickle Cell became much more difficult.
Crescent Kids used fundraisers and social media to help spread awareness about Sickle Cell disease. They created care and wellness packs, offered online education on wellness, mindset, and pain management, and set up a support network.
Since then, the charity has grown from strength to strength. They have followers and team members across the world; Funmi met one of her team members on LinkedIn – Molille, who lives in Lagos, Nigeria. The charity is a great help for anyone with Sickle Cell disease or those caring for them. One of their latest projects is the Eli Health App – the first app aimed at children and carers, not just healthcare professionals. The app helps users by making things easier. It includes features like daily logs to track symptoms and comfort levels. Users get reminders to stay healthy and hydrated, which is crucial for those with Sickle Cell. Plus, it allows reporting that gives feedback to doctors and clinicians. The App has been chosen for the NHS Clinical Entrepreneur programme, which is the largest NHS initiative for innovators. The programme helps NHS employees and service users create effective health solutions.
Crescent Kids is also co-leading a new research project with UCL Great Ormond Street Institute of Child Health and NIHR. This project, called CARES Research, focuses on every child in England with Sickle Cell, and will explore their health and education outcomes. The aim is to understand how the disease impacts children’s quality of life.
The study will hold focus groups on:
8th March in Birmingham
Families with children who have Sickle Cell are encouraged to join and share their stories. The London focus group will take place at Crescent Kids office on Camden High Street.
To register interest, email your name and preferred location (London, Manchester, or Birmingham) to ichppp.cares@ucl.ac.uk.
Both projects are expected to provide a wealth of data for healthcare systems. This will help improve visibility and care for those with Sickle Cell disease. Funmi is determined for other parents not to have the experience she did of feeling isolated while looking after a sick child.
If you know someone who has Sickle Cell, check out the Crescent Kids website:
