Giorgio Eduardo Evans-Lobato EB support fund

Hello.

My name is Dominic Evans and I am the lucky father to my beautyfull baby boy Giorgio Eduardo Evans-Lobato.

My son was born June 16th 2022 at st Richard's Hospital,Chichester.

Giorgio was born with a very rare skin disease called Epidermylosis Bullosa.

Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters. This is because Giorgio has been born with a complete absence of collogen 7 which means he blisters on touch, can be in extreme pain most of the time and needs 24/7 care to prevent infection from sores caused by the blistering of his skin.

We treat his skin daily by lancing the blisters,draining all liquid, using creams to create an artificial skin(barrier) and then dressing these areas with special polymed bandages that help to heal the skin as quick as possible and cusion and protect him.

He has to wear specially tailored clothes,uses special bottles for feeding and needs heaps of vaseline on the bottles as he suffers with blisters to both his tongue and throat.

He has a version of EB that unfortunately includes internal blistering and so as we have been told by the doctors and specialists that the first two years of life are particularly tricky statistically speaking if he can get through these early years he can go on to live a happy active life so we are hoping we can do everything possible to get him through this and give him the best quality of life he deserves.

This is so hard for myself and my partner as most nights we do not sleep because Giorgio rarely gets 2-3 hours before he either needs treatment or nappy changing because his skin cannot cope with a dirty nappy and is extremely uncomfortable for him if left to long.

As a result this means we have endured increased costs when it comes to Giorgio and as I have given up my job to care for Giorgio we have been reliant on universal credit to keep us which has been a a stressful affair. Only the charities acossiated with this desease and the local food banks have helped us until now which we are eternally grateful for and could not have managed without. Not to mention the amazing support we have had from my mother and family along the way.

We have also applied for housing as we now need more adequate facilities to care for Giorgio and our tiny one bedroom apartment is just far to small, and not appropriate for Giorgio to have the best quality of life in these first few years.

He needs as per recommendation from the EB charity DEBRA adequate lighting and a treatment room so as to accurately and carefully pop these blisters that appear as and when they are left to grow then huge areas of skin can completely detach from his body.

He needs his own room and also a treatment room which again from advice given needs to be located next to or near to a large wet room with disabled adaptions so that as he grows and knowing he may lose the ability to walk is essential!

This GO FUND ME is in place now to raise adequate funds to place a deposit on a house through the rent to buy scheme so that we may adapt the right size property for Giorgio's needs and secure our future as we really need to be concentrating on taking care of Giorgio. 

The chance of us finding the right sized place with with adequate facilities as a rental in our area are very low.

We have a long way to go but I do believe we can make it if we can get enough donations towards this goal!

We need somewhere appropriate to live locally so as to maintain all the treatment and care we have set up for him now. 

GREAT ORMAND STREET HOSPITAL are amazing and have really helped us to understand what we will be up against and designed his care carefully.

So please anyone who can donate anything whatsoever is going to be helping us massively to buy our first home and a house for Giorgio fully adapted so that he might stand a good chance of surviving this unimaginably tough challenge. 

THANK YOU SO MUCH FOR TAKING THE TIME TO READ THIS.