A family holiday thanks to the Marian Elizabeth Trust
Leo is four years old and lives in Liverpool with his mum Leah. Leo had brain damage as a baby.
Leo’s condition
Leah explains, “Leo suffered a severe brain injury at five weeks old. As a result he has been diagnosed with a series of complex medical conditions including quadriplegic cerebral palsy, gastrointestinal dysmotility, blindness, and many more. We have a lot of medical equipment to support Leo including a feeding tube and pump, a medical bed, a wheelchair. It’s hard work transporting all of Leo’s equipment, and sometimes I have to do it alone when travelling.”
How it affects the family life
Leo is described by his family as “cheeky and very smiley. He lights up the room no matter who meets him. Leo loves being bounced around and kissed. He’s a proper pamper prince.”
Leah says, “When Leo was born, I didn’t know what a feeding tube or any other specialist equipment was. I’ve learnt so many things and I’m really grateful for my life. I used to think little problems were quite significant, but now I realise that I shouldn’t complain over small things.
“It’s definitely been an eye opener having a child with disabilities.”
“Leo’s conditions affect me a lot. I can’t get a shower when I want to because Leo can’t be left alone since he can choke. I can’t go back to work now because Leo is too poorly. He requires 24/7 care and is on symptom management. I have limited support as Leo’s needs are so complex. I do get some respite when the carers are here but most of that time is spent catching up on sleep.”
Support from Family Fund and the Marian Elizabeth Trust
Family Fund have supported Leo and his family on a couple of occasions. Leah recalls, “I applied to Family Fund for a hot tub because Leo enjoys hydrotherapy and it’s good for his conditions. When I spoke to someone from Family Fund they mentioned that I was eligible for an additional grant from the Marian Elizabeth Trust.
“Thanks to the Marian Elizabeth Trust we were able to use the additional funding for a family break to Haven. I went with a friend and their son. We made so many memories. Leo got to ride a donkey for the first time. It was lovely to have so many new experiences.”
