Help Ezra’s family during his hospital stay

Hello my name is Carleyann and I wanted to ask for some help for my brother Kain and his wife Lucy who are going through a difficult time.

Their baby- Ezra was born with Holt Oram syndrome Which is a genetic condition that affects the upper limbs and the heart. 75% of babies with Holt Oram will have a heart defect, usually, and in Ezra’s case that defect is holes in the heart.

Ezra’s case has been full of complexities from the start, from thinking that he probably has one or two septal defects that can be fixed with catheterisation to finding out that he has multiple holes of varying sizes (Swiss cheese heart) he has only just had his first birthday and has already had to endure open heart surgery to have a band fitted to slow the flow of blood from his heart to his lungs which wasn’t as successful as they had hoped, and because of this his growth and development has been slower resulting in him having a feeding tube fitted.

Most recently Ezra was scheduled to have the larger hole closed but while in surgery they found that there was damage to his lungs and damage to his mitral valve so were unable to continue with the surgery. Since then he has been under sedation and is due to have complex open heart surgery to repair the valve this week.

Kain and Lucy have been travelling back and forth between the hospital in west London where Ezra is staying and then home to be with their older son Fyfe. They have been living on ready meals (paying west London prices) as the hospital are unable to feed them. And having not been able to work this is a huge loss of earnings for them as my brother is self employed.

Although money is not at the forefront of their mind at this time, as a family we are aware of the added strain this will put on them.

If you can spare anything at all to help, please alleviate some of the financial strain they are facing so that they can concentrate on getting their baby well.

Thank you