Boy with rare condition says it's like 'hundreds of ants crawling under skin'

01 October 2023 , 13:10

1124     0

Theodor Morar has been suffering with the painful condition for the past seven years (Image: Florin Morar)

A desperate couple have flown their tormented young son abroad in a bid to find a cure for his ultra rare condition which is like "hundreds of ants crawling under the skin."

Florin Morar, 46, and Mariana Truica, 41, who both have an experienced background in health and social care, said they have spent years searching for answers after their son Theodor's skin cracked open "raw" across parts of his body.

The nine-year-old, from Northampton, has now been diagnosed with an extreme form of eczema called Neurodermatitis, which can cause the skin to develop thick and leathery red patches. It can lead to such intense itching that it can cause open wounds that bleed or lead to infection.

Theo started to develop red marks on his body from a young age (Florin Morar)

The condition can cause dry skin and itchiness (Florin Morar)

Those affected can feel itchiness the most when they are trying to sleep or when they become stressed or anxious. For Theo, the condition is relentless and he often lies awake crying due to suffering in agonising pain. Theo has been impacted so harshly by the condition, that it has affected his physical mobility, making it hard to even lift his arms at times.

When the youngster so despaired of the pain he told his parents "I want to die", they embarked on drastic action and took Theo to a specialist clinic in Germany which, they discovered after months of research, had a positive record in treating the condition.

Cherished girl, 3, who spent half her life in hospital dies before surgery

Theo's dad revealed how they first realised their son had an issue, when they noticed red marks on his cheeks when he was a baby. He said: "From the age of around one, the marks on his face and body became more obvious. The diagnosis he was given in the UK was Dermatitis Atopica. But the diagnosis he was given in Germany is Neurodermatitis, which is slightly different, and it's very rare in children. The frustration which we had over the years was that there was no solution. He was told to just put cream on."

The condition has since worsened and has caused the skin by his knees to become cracked (Florin Morar)

Florin said his son's deliberating condition caused anxiety and stress in the household to become "sky high" because there was nothing they could do about it. He said they received ill medical advice from the NHS and were given "rubbish prescriptions" such as "unbearable cortisone cream" that reportedly made his condition "worse."

He added: "Over the past two to three months Theo's morale, self-esteem and personality have changed and dropped. Theo refused to leave the house to even go for a walk. He was increasingly more angry and agitated and his physical mobility was affected due to his skin splitting behind the knees and making it difficult for him to walk. His arm mobility became sluggish.

"Theo's condition gradually but rapidly decreased and what once was a sleepless night a week, became seven nights, with Theo constantly waking up every night itching, crying and being very unsettled. We have noticed that by using cortisone cream, Theo's skin began to become very thin in places, particularly around his ankles, neck, behind ears, behind knees and elbows and his skin began to crack raw.

Theo has suffered irritation on his face (Florin Morar)

His parents first noticed the marks appearing when he was a baby (Florin Morar)

"In Theo's words: 'Daddy it feels like I have hundreds of ants crawling under my skin every day and night. It's itchy and it hurts daddy.' On a few occasions, Theo mentioned: 'I want to die, I can not take this anymore, I wish I'd go away from home and come back when I am better, so I don't have to put you all through this."

The dad-of-three, who described Theo as a "popular young man", said the condition has impacted his education because he sometimes has to stay home. Florin explained that Theo had become "withdrawn" over time. He continued: "It has affected the things that he wants to do. So he can't really play football, which he loves and that frustrates him. When he gets frustrated it has to do with the neuro system and then he gets red patches and then he scratches." After countless months of research, Florin found a clinic in Germany which has shown results in improving the condition. His wife and son travelled to the clinic straight away, where Theo was admitted on August 22.

Theo has noticed improvement since undergoing treatment in Germany (Florin Morar)

Theo has been undergoing "tailored treatment" and must follow a strict diet of consuming powdered milk to ensure his recovery is not jeopardised. Speaking about seeing signs of improvement, Florin said: "It does feel amazing, just to see his personality being slightly better. You can see the condition of his skin has massively improved by around 40% already, which is a huge step." Theo was recently discharged from hospital and is now back at his home in Northampton but Florin says his "battle" has only just begun. The nine-year-old will have to rest at home for a few weeks to ensure his skin doesn't become agitated. He must also continue his powdered milk diet for the time being.

Florin described the recovery period as being a "little bit like a baby". He said it feels "amazing" that they can finally "see the light." He added: "The message I want to pass on to parents is keep on trying. There was a point where I thought that's it there is nothing we can do, but actually, the medical practice doesn't exist in the UK. You have to reach out and try different countries. Just don't give up." Theo will have to return to the clinic for further treatment at least once every six weeks. The powdered milk alone costs around €50 per use. If you would like to donate to his treatment visit here.

Monica Charsley