Boy, 12, with rare genetic skin disorder can now play football after breakthrough medical trial

A 12 year old boy with a rare and painful cutaneous state finally received more freedom to play football and cycle thanks to a New clinical trial.

Gabrielius Misurenkov suffered from Dystrophic Epidermolysis Recocessive Bullosa (RDEB) Since he was a baby.

Inflammatory disease is seriously debilitating, and people with it have extremely fragile skin that is easily damaged, causing blisters, deep wounds and scars.

About only 150 children in the United Kingdom are affected by genetic disease, but without available treatment, the symptoms should be managed by dressing wounds and applying eye ointments.

Thus, when Gabrielius had the chance to join a clinical trial in Great Ormond Street (Gosh), he jumped at the opportunity.

“I wanted to participate in the test because I was excited to see if it could help improve my condition and I could therefore do more things I love, like playing football and spending time with my friends,” he said.

The young person, who can speak three languages and is a big fan of the footballer Lionel Messi, needed his bandages to change three times a day, or more if he was injured.

But since the trial, he has managed to do a few things that he could not before treatment, including participation in certain sports in school, cycling in the park on the grass and being able to play football with his friends with a sweet ball.

His mother, Jolita Cekavicia, said: “Gabrielius made the trial very well. His injuries healed faster and his skin was less red and inflamed.

“His skin was also less itchy, which also reduced her scratches. His sleep was also less disrupted because he didn’t need to change his special dressings too often, so it was a great advantage. ”

Mrs. CEKAVICIENE said that the trial had given her son more freedom than before, but he must still be careful in any activity to avoid falling or being hit.

Gabrielius was referred to God as a baby after the doctors spotted an injury at his birth, and he was diagnosed with RDEB at the age of two weeks.

Over time, the disease can lead to serious complications and many patients with disease develop a type of skin cancer called epidermoid carcinoma when they are young adults – this is the most common cause of death for RDEB patients.

Ms. Cekavicia said, “The first two years were really difficult because you had to look at him constantly – even rub your eyes could cause painful blisters.

“He couldn’t even tell us how much pain he was doing or where he was suffering.”

Gabrielius is one of the 30 children who participated in the new clinical trial of Gosh and the children’s hospital in Birmingham, in which he received certain stem cells via an intravenous drop.

In the trial, doctors have evaluated if regular infusions with mesenchymal stromal cells (MSC) have improved the symptoms of condition with condition, after studies have suggested that this treatment could promote the healing of wounds, reduce inflammation and stimulate tissue regeneration.

The patients went to the hospital and had a drip that delivers the cells in 10 to 15 minutes.

In the trial, funded by the NHS England, the National Institute for Health and Care Research and the EB Cure Cure Cure Organization, the children received a treatment called Cordstrom, manufactured by Dumunebio.

Inmunio has agreed to provide Cordstrom free of charge for a year for all the children who participated in the trial, so that researchers can continue to study them, and patients should obtain two treatment of treatment every four months.

The company requests regulatory approval of treatment so that it can be approved for use in the United Kingdom and other countries.