Hello,

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

My partner Michelle Lobato and I have recently had some fantastic news of an opportunity to help our son with his debilitating disease DEB more commonly known as (Butterfly skin.

The medical name is Epidermilosis Bullosa Recessive Distrophic.

It is the most severe form of the disease and causes our son excruciating pain, blisters that form on all areas of his body, cause open wounds, deformaties of the hands and feet, in turn enevertably creating mobility issues and a high chance of infections that can lead in extreme cases to death if not for the continous loving,devoted unwavering care provided by both myself, my sons mother and our family and alongside the fantastic support of GOSH. We undertake a 4 hour routine dressing changing of his entire body to treat his wounds every two days and he requires 24/7 supervision as the slightest touch,fall,scrape or itch cause blisters that continue to grow unless lanced daily and only we can do this. Even simple things such as nappie changes can take up to an hour at a time and need changing 50% more than an average child. His diet has to be blended into a puree to feed in a bottle as he cannot swallow solid foods and may someday need to be fed in other ways but unlikely through his mouth and throat due to the internal blisters caused and pain it gives him. He also cannot go to the toilet without extreme pain and trauma as each time it re-opens wounds internally and externally that cause him extreme pain and risk infection.so far we have avoided this and it's down to his fantastic mothers continuous care and his fathers dedication to be the best he can for his son.

Our son Giorgio is the most vibrant, happy dispersioned boy I've ever met concidering what he endures and his strength continuously inspires me to fight for him in every way I can.

If I start by expressing all the sacrifices we have made to enable him to have the best chance in his life to be happy, live a functional normal childhood and life as possible.

When giorgio was born I was employed and progressing with a hard faught career as an Electrician and Facilities Manager for NATO.

I had booked a week of paternity leave with all expectations of a normal birth and transition into fatherhood.

My partner Michelle was stranded in the uk during the covid pandemic and so had no legal status in the UK. She was unable to work or claim recourse to public funds although I had started a process for her to aquire a partner Visa to enable us to stay together and raise our family here in the uk.

When our son was born everything was planned for me to return to work after the week of paternity leave at just £150 per week and although this amount is no where near what I would earn nor what is required in all good faith to endure the arrival of a baby and pay the bills we all pay, the arrival of my son was the only prize I cared to aggnoledge or consider!

My partner had a cesarian and so had to rest up for at least a week and I found myself having to become a doctor,nurse,immigration solicitor,father and of course trying to hold on to being myself Dominic.

My instincts seemed to pay off as I swiftly applied across the board for any support and help because my partners situation dictated that she could not assume complete care for my son based on his needs with this horrific disease.

He was born without any skin on his back due to a blister that was as big as my foot . His head was damaged by the doctors when the extracted him from my partners womb not knowing of the terrible disease he was afflicted with. My partner had suffered hurrendous infections and allergic reactions during pregnancy and this most dreadful news was I feared enough to destroy her and so I stood between her and Giorgio as they cleaned him up before she could see him and before the doctors had to wisk him away to a special maternity ward .

We knew not what this problem was and both of us felt desperate, destroyed,nervous,worried and generally confused as we had no idea what this problem was.

On discovery days later we were delivered the news our son had the rare skin disease Epidermilosis Bullosa .

I had to resign from my employment and dedicate myself to my son as this could not be handled individually especially as my partner could not read,write or speak English at any comprehensive level and therefore could not deliver the level of care for such a situation.

The woman I love was the most caring,loving,emotional,sensitive and kind person I had ever met but I could not leave her alone to deal with such a horrific reality.

I had to make hard choices and so I sold my car, all worldly pocessions and anything that could cover our bills at least until the government awarded us funds for Giorgio and his up-keep being as extreme as it is.

It took three months before any help was awarded and I had spent everything i had and even had help from family members that literally just managed to get us through it.

Our story since this difficult start has been nothing but challenging,demanding and upsetting as we watch our little boy crumbling in front of us with no cure and only mitigation techniques to extend life and improve the quality of life.

Both myself and my partner became nurses and doctors and were left with basic instruction to develope a routine to manage his condition, aware that most nurses and doctors haven't even come into contact with this rare disease.

We are now two years and 5 months on and having been told the first two years are the most dangerous and crucial for our son to fight on and live. We have both made it as comfortable life as possible and we are both optimistic because of the strength, endurance,patience, intelligence and pure joy our son projects towards all that are blessed with his presence.

He is both of our life and soul ♥️.

I have organised all benefits and even a charity mobility car as he was unable to be on public transport due to a low immune system and the rediculous mobility rules that state even a child with a disability cannot claim mobility until three years old not to mention the practical hindrances of broken elevators at train stations,distance,cost and the realities of his condition getting to and from hospitals and anywhere he was required to attend.

My partner did not drive or have recourse to public funds so I continued to half my allowance of 345 pounds per month from universal credit with her for over 1.5 years.

I managed to complete applications for both fee wavers and a visa application for my partner during all of this and finally in October 2023 she was granted a partner Visa, meaning she could remain in the uk and with Giorgio and myself and also have support of her own from the DWP.

Now since this fantastic news and huge pressure was on us we have had involvement from social services which has been a complete disaster!

They have defomated our characters, disrupted my sons benefits and coerced to disrupt our situation which was managed on a fine tooth comb by myself.

Now due to there interference our DLA for our son has been delayed for 3 months!

They have broken several key rules that dictate their powers and code of practice, need extreme reformation,should be held to account and had it not been for the possibility of more disruption to my son i had every right and evidence to persue them for failings that not only had a detrimental effect on myself mainly but actually jeopardised the welfare of my son and put my partner into an even more vulnerable position. I should be prosecuting them for there negative,disruptive and obvious lack of real concern for the welfare of our child in the beginning of there contact with us, having had a shining report as to the care given by both myself and my partner and the case or investigation being closed. They then broke all there own rules and without court order,approval from superiors or any kind of order breached protocol, defomating charachter aswell as endangering the child in question during such delicate,difficult and crucial times by not understanding the situation,my sons disease or the position my partner was in.

I will not rest until i have justice in the country i love, pay taxes and have even served for NATO for.

I just want to see justice and the truth prevail as this has had such a negative effect on us all.

This only applies to previous social workers and not our current situation and a particular worker that I was informed was dismissed at the same time as being apologised to by the manager of said worker who had been given no permission to take any action and breached all protocol to do so.we just hope things return to normal so we can provide our son with what he needs without the interference and be able to handle things without them pulling rugs out to deliberately disrupt a well oiled machine from serving it's purpose!

So now Giorgio my son has been offered and we have excepted on his behalf a stem cell infusions treatment trial that could potentially lead to improvement of life,faster healing of wounds, reduction of inflammation, reduction of itching and allergic type reactions.

This for both of us has been an absolute lifeline and brings tears to my eyes at the thought of Giorgio possibly being in less pain and able to function as a normal child would.

I have given and will give all i have to provide him with this possibility.

We now have a fight on our hands for giorgio with regular journeys to great ormand street hospital to undergo treatment over two days at a time. With a frequency of bi-weekly visits and continuously monitoring due to the possibility of adverse effects these times will be testing but worth it!

The DLA has still not actioned Giorgios case due to meddling from social services and so we do not have the means to undertake the travel and up keep of this treatment without your help.

I will place photos and videos upon this go fund me so you can witness and follow the progress and journey we are on as of 1st November 2024.

We are due back there within two weeks and I appeal to everyone to please help is raise the funds we need to cover our travel,food,equiptment,extra things Giorgio needs as our universal credit as full time carers does not come close to this reality we face.

Our ultimate objective is to get the house we have adapted and extended to furnished a downstairs disabled access and wet room combined for his 3 hour treatment sessions every other day. This would give him a comfortable, accessible and purposefully space of his own as his current room is to small and our shower room. Is ridiculously to small to menouvre whilst bathing him or changing the dressings. If we could use the residue of this go fund mevto start that process it would be amazing.

We appreciate all the love giorgio is receiving and just want his life to be as pain free and enjoyable as possible!

Please help us.

My son Giorgio needs to get through these 17 months and hopefully a better life or at least a chance for a less painfull life.

This will also benefit the worldwide problem this disease presents and hopefully one day lead to a cure!

Thank you for your time and God bless you all.