At four weeks old, Lilia was diagnosed with a rare complex genetic condition which seriously impacts several aspects of her health.
Lilia has global developmental delay, as well as decreased muscle tone, swallowing difficulties, frequent chest infections, sleep apnoea, seizures, hearing problems and silent reflux. She is tube fed and needs constant monitoring.
Rainbow Trust fully understands our situation. Before they came I was stuck in my house for two years. I didn’t have contact with any families or with any children like Lilia.
Ilona, Lilia's mum
The family was referred to Rainbow Trust in March 2023 when Lilia was two years old.
Family Support Worker Lilia started providing vital practical and emotional support to the family for a year and a half, enabling Ilona and Nina to get out of the house to a special playgroup and hospice.
Last year, Family Support Worker Merissa began supporting them, helping Nina maintain her education by taking her to and from school.
Merissa also drives the family to hospital appointments: Ilona is not able to take her alone due to Lilia requiring constant monitoring.
This has also enabled Lilia’s dad Tom to continue working as he does not need to continually take time off work to attend appointments.
Merissa’s transport support has also enabled us to leave the house and for Lilia to access hydrotherapy and music sessions. She has also introduced Tom to dads’ support groups, which he has found very helpful.
Ilona, Lilia's mum
Ilona, Lilia's mum said:
"Nina was very lonely before, but Rainbow Trust has made her feel more looked after and supported. She has another person to spend time with, she doesn’t have to rely on me."
Ilona can confide in Merissa and she has helped her cope with feelings of isolation and loneliness.
Please donate today. With your generosity we can ensure families like Lilia’s don’t have to struggle alone.
There are so many families like Lilia's, that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like Lilias's.