Cystic Fibrosis - Acer Rose

Here is my son Acer Rose…

You see a beautiful baby boy, he is the happiest baby and has brought endless light to our family

However…he has a rare genetic disease CYSTIC FIBROSIS.

We were told when he was two weeks old and introduced to his ‘team’ of professionals that will be dealing with his care.

It completely shook our world!

What is it?

What do we do?

What does this mean?

Will he be ok?

Will we outlive him?

HELP

This has impacted our daily life with appointments/giving medication/checking weight/worry and trying to keep things normal and fun for our other two children with them having a new baby brother.

There is a drug that hopefully will be available to Acer when he turns 2 and will give him a ‘normal’ life. So we want to do everything possible to raise money to get put into the research for this miracle drug (Kaftrio).

He’s a fighter and we will never stop the fight for him

So all funds raised on 4th November will be going straight to this cause.

Cystic Fibrosis - an inherited condition that causes sticky mucus to build up in the lungs and digestive system. This causes lung infections and problems with digesting food.

Symptoms usually start in early childhood and vary, the condition gets slowly worse over time, with the lungs and digestive system becoming increasingly damaged.

Treatments are available to help reduce the problems caused by the condition and make it easier to live with, but sadly life expectancy is shortened.

If ANYONE would like to donate to CF please get in touch