Sponsor a Family Support Worker for Sick Children

Frank was just three and a half years old when he had his first seizure. A year later after many more seizures, Frank was diagnosed with Late Infantile Batten Disease, a rare degenerative condition. Four years later Frank is unable to see, speak, smile or move, is fed through a tube and needs help to breathe.

Before his diagnosis, Frank loved playing on the beach, climbing in the local park and jumping on the trampoline with his brother and sister, Kirk and Mae.

Struggling to cope after Frank’s devastating diagnosis, Rachel and Bob, his parents, were referred to Rainbow Trust Children's Charity.

Luci, their Family Support Worker, helps with everyday activities like taking Frank to the park. He is completely dependent and his complex needs make just leaving the house difficult. But with Rainbow Trust’s support, Frank can use and enjoy activities other children his age enjoy.

Luci supports the whole family and recently helped Mae, Frank’s older sister, make a collage of photos celebrating Frank’s life. Mae enjoyed doing it with Luci and the collage is something the family will cherish forever.

“Luci supported us when Frank had pneumonia and was in hospital for three weeks. She visited with coffee and cake and brought books to read to Frank and gave me some much needed respite,” said Rachel.

Luci helps with everyday activities like taking Frank to the park, accompanying him to hospital appointments and reading stories to him. Luci also goes on long walks with Rachel, providing her a neutral space to talk about the stresses of family life.  

“Having someone to talk to makes such a difference. Most people don’t understand the demands or know how to help so having someone who does means so much and really reduces the sense of isolation", says Rachel.

When Frank was referred to a children’s hospice, Luci visited regularly and encouraged Rachel to leave Frank’s side for a few hours to get some breathing space, and find time for herself. Rachel describes her time with Luci as the “best therapy.”

The outlook for Frank is sadly not a positive one, however, Luci and the rest of the Rainbow Trust team will support the entire family and remain in their lives for as long as we are needed.