Jesse was referred to Rainbow Trust via a local support team in October 2024 so that the family could get help with the struggles of his condition: glutaric aciduria type 1.
This is a rare and dangerous life-threatening metabolic disorder that can cause neurological damage and also disability. Jesse is in a wheelchair. He can’t hold his head, can’t sit, requires a feeding tube and is non-verbal.
Dad Matt works six days a week and mum Kirsty is Jesse's main carer.
Family Support Worker Sharon began supporting Jesse’s family by driving Jesse and Kirsty to and from hospital.
Jesse suffers from dystonic episodes, sometimes whilst in the car. These are involuntary and very painful muscle spasms that affect Jesse without warning. Kirsty must be able to assist him and tend to his needs at all times, including in the car.
It is nearly impossible for Kirsty to use public transport, especially now that she also has a 10 month-old baby, Reggie.
The trip to the hospital is over an hour’s drive each way so Sharon picks Jesse, Reggie and Kirsty up from home and drives them to the hospital.
Sharon offers support, safety and reliability.
Leased vehicles reduce the risks of ageing vehicles and breakdowns in the fleet of cars, meaning Family Support Workers can reach families and take them to appointments securely and on time.
Sharon also supports during Jesse’s appointments which usually take the whole day. Sharon watches Jesse so Kirsty can concentrate on what the doctors are saying and stays with Jesse while they wait so Kirsty can have some respite.
She supports Kirsty emotionally as well, when Kirsty needs it, when she is at a low point, when they are in the car. This support is invaluable.
The transport support that Sharon provides helps parents like Kirsty, easing their anxiety, stress and worries about long journeys, parking fees, cost of petrol, traffic jams and delays that may risk missing appointments.
These journeys also offer an opportunity for parents like Kirsty to off-load and to prepare for the appointments ahead. And on the way back home, they can discuss how it all went and plan forward.
Hundreds of families rely on the safe transport and emotional support we provide to them. With your kindness we can help ease the burden on seriously ill children and their families.
Please donate today so we can continue supporting families in desperate need of help. Thank you.