When Sharon Forsyth got the cheque from Cliona’s Foundation, tears rolled down her face. “Someone was listening — I didn’t feel so alone,” says the East Cork-based mum, whose two-year-old has MMA — Lorna’s body can’t metabolise protein in the normal way.
With patron Miriam O’Callaghan, Cliona’s Foundation is the only national charity here offering financial support for non-medical costs associated with a child’s critical illness.
Sharon and Alex Forsyth thought Lorna was a perfectly healthy child until she started on solids. “This meant a huge amount of protein going into her body —– it couldn’t cope. It started to break down.”
Looking after Lorna requires strictly measuring her protein intake. She can have two portions daily — one portion equals 28g of meat or two fish fingers. “I have to weigh everything and record what she eats in a food diary. It’s difficult in restaurants or someone else’s house. I put her food in a lunchbox — my friends know if she doesn’t eat what’s in the lunchbox, it has to go back in because I have to weigh what she’s had.”
Whenever Lorna’s sick, her body produces huge amounts of MMA. She’s been hospitalised many times, even for a simple cold for anything up to seven days. “A normal child can go off food and liquids when she’s sick. This can’t happen to Lorna — if she stops drinking her special milk, she must go to hospital and be put on a drip.”
Lorna spent much of her first year post-diagnosis in hospital, the first time for three weeks.
The stay-at-home mum’s often lengthy hospital stays with Lorna meant she had to pay childcare fees for Molly, 7, and Orla, 5. Then there was Sharon’s food while at the hospital as well as parking charges. “I didn’t know where the money was going to come from.”
Hospital nurses encouraged Sharon to write about her plight and the Jack & Jill Foundation circulated her letter to charities. Cliona’s Foundation responded, sending Sharon a one-off cheque for €1,500.
Brendan and Terry Ring — who started Cliona’s Foundation in 2007 after their daughter died — have noticed a consistent 15-20% summer dip in donations from June to August. Demand from families still continues, so a special summer appeal has been launched, urging people to consider community-based fundraising to help the charity.